PRISMS Regional Representatives & Resources

PRISMS is proud to provide a list of Resources within each state as well as our Regional Representatives.

Each representative is a family member to someone with SMS and has volunteered to serve the SMS community by providing guidance for accessing information and serving as an additional connection for families to PRISMS and our many programs and services. Additionally, each Regional Representative assists in organization local meet-ups providing opportunities for families to connect and develop life-long relationships.

Remember, each Regional Representative is a volunteer. You may find it takes some time for them to respond back to you. For more immediate assistance, please contact PRISMS directly at in**@****ms.org.

Alabama

Jill Wood

Jill Wood lives in North-Central Alabama. Her son, Kace, was diagnosed with SMS in 2012 just before his second birthday. She is grateful to have found PRISMS in a Google search after they received Kace’s diagnosis. They were able to attend their first PRISMS conference in Colorado only a few short months after diagnosis. The wealth of knowledge they found at the conference(s) has been invaluable to them, as they have always struggled to find medical professionals with knowledge or understanding of SMS. The connections and camaraderie with other families we found through PRISMS has been a priceless gift to their family.

Email: al*****@*******ms.org

Alabama Resources

ADA CenterSoutheast ADA Center
1419 Mayson Street NE
Atlanta, GA, 30324
(800) 949-4232 (V/TTY)
(404) 541-9001 (V/TTY)
http://www.adasoutheast.org

Alabama Family Trust
www.alabamafamilytrust.com

Assistive Technology
STAR (Statewide Technology Access and Response for Alabamians with Disabilities)
602 S. Lawrence St.
Montgomery, AL, 36104
(800) 782-7656 (In AL)
(334) 613-3480
(334) 613-3519 (TTY)
http://www.rehab.alabama.gov/star

Autism
Autism Society of Alabama
4217 Dolly Ridge Road
Birmingham, AL, 35243
(877) 4-AUTISM
(205) 951-1364
http://www.autism-alabama.org

Career & Technical Education
Alabama State Department of Education
P.O. Box 302101
Montgomery, AL, 36130-2101
(334) 242-9111
https://www.alsde.edu/sec/cte/Pages/home.aspx

CHIP Program (health care for low-income uninsured children)
ALL Kids Children’s Health Insurance Program
Alabama Department of Public Health
201 Monroe Street, Suite 250
Montgomery, AL, 36104
(877) 774-9521
(334) 206-5568
http://www.adph.org/allkids/

D D Council
Alabama Council for Developmental Disabilities
RSA Union Building
100 N. Union Street, Suite 498
P.O. Box 301410
Montgomery, AL, 36130-1410
(800) 232-2158
(334) 242-3973
http://acdd.org

Developmental Disabilities
Alabama Department of Mental Health
100 Union St.
Montgomery, AL, 36130-1410
(334) 242-3107 or (334) 242-3701
(800) 367-0955
contact form on web site
http://www.mh.alabama.gov/

Early Intervention
Alabama’s Early Intervention System
Department of Rehabilitation Services
Division of Early Intervention
602 S. Lawrence St.
Montgomery, AL, 36104
(800) 543-3098
(334) 293-7500
(800) 499-1816 (TTY)
contact form on web site
http://www.rehab.alabama.gov/ei

Epilepsy
Epilepsy Foundation of Alabama
3100 Lorna Rd., Suite 300
Vestavia Hills, AL, 35216-5452
(800) 626-1582 (In AL)
(251) 341-0170
mg******@***la.org
http://www.epilepsy.com/alabama

Independent Living
To find contact information for the Statewide Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Shepherd, Suite 1000
Houston, TX, 77019
(713) 520-0232 (V/TTY)
il**@**ru.org
http://www.ilru.org
To find contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0334 (V)
(202) 207-0340 (TTY)
nc**@**il.org
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc of Alabama, Inc.
557 S Lawrence St.
Montgomery, AL, 36104
http://www.thearcofal.org/

Learning Disabilities
Learning Disabilities Association of Alabama
P.O. Box 244023
Montgomery, AL, 36124
ta****@**aa.org
https://ldaamerica.org/lda-chapters/alabama/

Mediation
Alabama State Department of Education
50 North Ripley Street
PO Box 302101
Montgomery, AL, 36104
(334) 242-9700
http://www.alsde.edu

Mental Health
NAMI Alabama
4122 Wall Street
Montgomery, AL, 36106
(800) 626-4199 (In AL)
(334) 396-4797
te***@*********ma.org
http://www.namialabama.org

Mental Health – Youth
Office of Children’s Services
Alabama Department of Mental Health
P.O. Box 301410
Montgomery, AL, 36130-1410
(334) 353-7110
contact form on web site
http://www.mh.alabama.gov

Parent Teacher Association (PTA)
Alabama PTA
470 S. Union Street
Montgomery, AL, 36104-4330
(800) 328-1897
(334) 834-2501
al*******@*ta.org
http://www.alabamapta.org

Parent Training and Information Center (PTI)
Alabama Parent Education Center (APEC)
10520 US Highway 231
Wetumpka, AL, 36092
(866) 532-7660
(334) 567-2252
ap**@*****************er.com
http://www.alabamaparentcenter.com

Protection & Advocacy
Alabama Disabilities Advocacy Program (ADAP)
The University of Alabama
Tuscaloosa, AL, 35487
(205) 348-4928
http://adap.ua.edu/

Relay Services
(800) 548-2547 (V)
(800) 548-2546 (TTY); 711 (TTY)
(888) 229-5746 (Speech to Speech-English)
(866) 260-9470 (Speech to Speech-Spanish)

Special Education
Special Education Services
Alabama Department of Education
P.O. Box 302101
Montgomery, AL, 36130-2101
(800) 392-8020 (in AL)
(334) 242-8114
http://www.alsde.edu/

Special Format Library
Alabama Regional Library for the Blind and Physically Handicapped
6030 Monticello Drive
Montgomery, AL, 36130-6000
(800) 392-5671
(334) 213-3906, ext. 921
fa**********@**********ma.gov
http://statelibrary.alabama.gov/

Special Health Care Needs
Alabama Department of Rehabilitation Services
Children’s Rehabilitation Service
2129 East South Boulevard
P.O. Box 11586
Montgomery, AL, 36111-0586
(800) 441-7607
(334) 281-8780
(800) 846-3697 (in AL)
me***********@***********ma.gov
http://www.rehab.alabama.gov/crs

Family Voices
1050 Government Street
Mobile, AL 36604-2402
877-771-FVOA
http://familyvoicesal.org/

Speech and Hearing
Speech and Hearing Association of Alabama
3416 Primm Lane
Birmingham, AL, 35216
(256) 823-6106
In**@*********AA.org
https://www.alabamashaa.com/

State Web Site
Connect with your state’s official website to find all manner of state agencies and information, including how to contact your governor and/or your representatives in the Senate and House:
http://www.alabama.gov/

Transition Services
Special Education Services
Alabama State Department of Education
P.O. Box 302101
Montgomery, AL, 36130
(334) 242-8114
dr***@***de.edu
http://www.alsde.edu

UCEDD
Civitan International Research Center
University of Alabama at Birmingham
933 19th Street South, CH19 Room 307(Location)
1720 2nd Avenue South, CH19 Room 307 (Mailing)
Birmingham, AL, 35294-0021
(800) 822-2472
(205) 934-0021
fb******@*ab.edu
http://www.circ.uab.edu

Vocational Rehabilitation
Department of Rehabilitation Services
2129 East South Boulevard
Montgomery, AL, 36116
(334) 281-8780
st***********@***********ma.gov
http://www.rehab.alabama.gov/vrs

Other Organizations
Alabama Lifespan Respite Resource Network
1521 E. 9th Street
Anniston, AL, 36207
(866) 737-8252
(256) 237-3683
al************@*ol.com
http://alabamarespite.org
Alabama APSE, The Network on Employment
P.O. Box 11586
Montgomery, AL, 36116
(334) 613-3527
by*********@***********ma.gov
http://www.al-apse.org
Easter Seals Alabama
5960 E. Shirley Lane
Montgomery, AL, 36117-1935
(800) 388-7325
(334) 395-4489
in**@************ls.com
http://www.alabama.easterseals.com
Governor’s Office on Disabilities
560 South Lawrence Street
Montgomery, AL, 36104
(334) 293-7189
(888) 879-3582
gr***********@**********ma.gov
http://www.good.alabama.gov
Lakeshore Foundation
4000 Ridgeway Drive
Birmingham, AL, 35209
(888) 868-2303 (In AL)
(205) 313-7400
http://www.lakeshore.org

Alaska

Amanda Collins

My name is Amanda Collins and I live in Anchorage, AK with my daughter Ansley (12) and her brother Holder (23). My daughter was diagnosed with SMS February 16, 2023. Before that, she had run under the diagnosis of “globally complicated, doesn’t fall under one umbrella”. With two previously failed genetic testings, we had started to think that maybe there was nobody else like us; that maybe we were all alone. Then our child’s Developmental-Behavioral Specialist told us that genetic testing had been expanded and insurance would now cover it. I immediately jumped on it. This began our new journey into the “Wonderful World of SMS!”

Upon getting the diagnosis we found ourselves being guided on all sides towards PRISMS. Immediately I knew we had found our home; our people. I knew that from this point forward we were not alone and never had been.

Now, a year later, I am excited to be joining this group as one of the Regional Representatives for the state of Alaska. Our journey has been a tough one, but we have learned so much! I hope to bring this same knowledge to the table and offer compassion, insight, love and guidance to those families experiencing the same or similar things. Afterall, We are all on this journey together.

Email: al****@*******ms.org

Alaska Resources

ADA Center
Northwest ADA Center
Center for Continuing Education in Rehabilitation
University of Washington
6912 220th St SW, #105
Mountlake Terrace, WA, 98043
(800) 949-4232 (V/TTY)
(425) 248-2480 (V/TTY)
db*****@**********on.edu
http://www.nwadacenter.org

Autism
Golden Heart (AK) Autism Society
607 Old Steese Hwy, Suite B #285
Fairbanks, AK, 99701
(907) 374-4421
(877) 374-4421
in**@************rt.org
http://www.asagoldenheart.org

Career & Technical Education
Office of Career and Technical Education
801 West 10th Street, Suite 200
P.O. Box 110500
Juneau, AK, 99811-0500
(907) 465-2800
http://www.education.alaska.gov

CHIP Program
Denali KidCare
P.O. Box 110601
Juneau, AK, 99811-0801
(907) 465-1696
http://dhss.alaska.gov/dhcs/Pages/denalikidcare/default.aspx

D D Council
Governor’s Council on Disabilities and Special Education
3601 C Street, Suite 740
Anchorage, AK, 99503
(888) 269-8990
(907) 269-8990
GC***@****ka.gov
http://dhss.alaska.gov/

Developmental Disabilities
Developmental Disabilities & Children with Complex Medical Conditions
Senior and Disabilities Services
3601 C Street, Suite 310
Anchorage, AK, 99503
(800) 478-9996
(907) 269-3666
http://dhss.alaska.gov/dsds/Pages/default.aspx

Early Intervention
Early Intervention/Infant Learning Program
ILP Main Office
550 West 8th Avenue
Anchorage, AK, 99501
(877) 477-3659
http://dhss.alaska.gov/

Independent Living
To find out the contact information for the Statewide
Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
1333 Moursand Street
Houston, TX, 77030
(713) 520-0232 (V)
(713) 520-5136 (TTY)
il**@**ru.org
http://www.ilru.org
To find the contact information for centers for
independent living (CILs) in your state, contact:
National Council on Independent Living
2013 H. Street NW, 6th floor
Washington, DC, 20006
(202) 207-0334 (V)
(202) 207-0340 (TTY)
nc**@**il.org
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc of Anchorage
2211 Arca Drive
Anchorage, AK, 99508
(907) 277-6677
in**@***************ge.org
http://thearcofanchorage.org

Mental Health
Division of Behavioral Health
Department of Health and Social Services
P.O. Box 110620
Juneau, AK, 99811-0620
(907) 465-3370
(907) 465-2225 (TTY)
http://dhss.alaska.gov/dbh/Pages/default.aspx
Alaska Mental Health Board
PO Box 110608
Juneau, AK, 99811
(888) 464-8920
http://dhss.alaska.gov/amhb/Pages/default.aspx
NAMI Alaska, National Alliance on Mental Illness
PO Box 201753
Anchorage, AK, 99520
(800) 478-4462
(907) 277-1300
al********@***il.com
https://www.namialaska.org/

Parent Organizations
Community Parent Resource Center
LINKS Parent Resource Center
3161 E. Palmer-Wasilla Hwy, suite 2
Wasilla, AK, 99654
(907) 373-3632
li*******@******rc.org
http://linksprc.org/

Protection & Advocacy
Disability Law Center of Alaska
3330 Arctic Boulevard, Suite 103
Anchorage, AK, 99503
(800) 478-1234
(907) 565-1002 (V/TTY)
ak**@***ak.org
http://www.dlcak.org

Relay Services
(800) 770-8255 (V)
(800) 770-8973 (TTY); 711 (TTY)
(866) 355-6198 (Speech to Speech)

Special Education
Office of Special Education
Alaska Department of Education
801 W. 10th Street, Suite 200
PO Box 110500
Juneau, AK, 99801-1894
(907) 465-8693
http://www.eed.state.ak.us/tls/sped/

Special Health Care Needs
Family to Family Health Information Center
Stone Soup Group
307 E. Northern Lights Blvd, Suite 100
Anchorage, AK, 99503
(907) 561-3701
(887) 786-7327 (toll free)
in**@************up.org
http://www.stonesoupgroup.org

Special Format Library
Alaska State Library
Talking Book Center
344 W. Third Avenue, Suite 125
Anchorage, AK, 99501
(800) 776-6566
(907) 269-6575
http://talkingbooks.alaska.gov/

Speech, Language, & Hearing
Alaska Speech-Language-Hearing Association
PO Box 111993
Anchorage, AK, 99511
(907) 212-0211
ak******@***il.com
http://www.aksha.org/

UCEDD
Center for Human Development
University of Alaska Anchorage
2702 Gambell Street, Suite 103
Anchorage, AK, 99503
(907) 272-8270
in**@*******hd.org
http://www.alaskachd.org

Vocational Rehabilitation
Division of Vocational Rehabilitation
801 W. 10th Street, Suite A
Juneau, AK, 99801
(907) 465-2814
http://labor.state.ak.us/dvr/home.htm

Other Organizations
Easter Seals Alaska
670 W. Fireweed Lane, Suite 105
Anchorage, AK, 99503
(907) 277-7325
http://www.alaska.easterseals.com

Arizona

Patty Loyer

AZ, NE

My name is Patty Loyer. I moved to AZ from NC in 1996. Our family of four lives in Gilbert, Arizona. After our son, Joey, was born in 2000, he was diagnosed with SMS at 10 months old. PRISMS has helped us connect with other families, especially before the age of social media. It has also created a place for educators, respite/rehab and medical professionals to look to for guidance and care for this SMS road we are all on.

I can help others with my background and education. I have three degrees in education: BS in Elementary Education, a Gifted Endorsement and a Master’s Degree in Education: Administration and Supervision. And just like all of the SMS mamas out there, I have a MOM degree in special education. Since Joey was diagnosed at such an early age, I am familiar with many programs starting with the age group of infants and toddlers. Towards the end of his high school years, both of Joey’s retinas detached. He is now legally blind. That combined with his hearing loss and other SMS issues, he is DeafBlindPlus.

I love helping others in any way I can. If I don’t know how to, I will try my best to learn how.

Email: ar*****@*******ms.org

Arizona Resources

ADA Center
Pacific ADA Center
555 12th Street, Suite 1030
Oakland, CA, 94607
(800) 949-4232 (V/TTY)
(510) 285-5600 (V/TTY)
ad*****@********ic.org
http://www.adapacific.org

Assistive Technology
Arizona Technology Access Program (AZTAP)
2400 N. Central Avenue, Suite 300
Phoenix, AZ, 85004
(800) 477-9921 (toll-free)
(602) 728-9534
(602) 728-9536 (TTY)
http://www.nau.edu/ihd/aztap/

Autism
Southwest Autism Research & Resource Center
Campus for Exceptional Children
300 N. 18th Street
Phoenix, AZ, 85006
(602) 340-8717
sa***@**********er.org
http://www.autismcenter.org
Autism Society of Greater Phoenix
PO Box 10543
Phoenix, AZ, 85064
(480) 940-1093
in**@*******sm.org
http://www.phxautism.org

CHIP Program
KidsCare
c/o AHCCS
801 E Jefferson St.
Phoenix, AX 85034
(602) 417-4000
(800) 654-8713
Check website for various offices
https://www.azahcccs.gov/Members/GetCovered/Categories/KidsCare.html

D D Council
Governor’s Council on Developmental Disabilities
3839 N. 3rd Street, Suite 306
Phoenix, AZ, 85012
(602) 277-4986
fk***@***es.gov
https://www.azdes.gov/ADDPC/Home/

Developmental Disabilities
Department of Economic Security
Division of Developmental Disabilities
P.O. Box 6123, Site Code (791A)
Phoenix, AZ, 85005
(602) 542-6853
http://www.azdes.gov/ddd

Early Intervention
Arizona Early Intervention Program (AzEIP)
Department of Economic Security
3839 N. 3rd Street, Suite 304
Phoenix, AZ, 85012
(888) 439-5609 (in AZ)
(602) 532-9960
http://www.azdes.gov/azeip

Epilepsy
Epilepsy Foundation of Arizona
P.O. Box 25084
Phoenix, AZ, 85002-5084
(888) 768-2690
(602) 406-3581
ef**@*hw.edu
http://www.epilepsyfoundation.org/arizona/

Intellectual & Developmental Disabilities
The Arc of Arizona
3839 N. 3rd Street, Suite 105
Phoenix, AZ, 85012
(866) 501-2721
(602) 234-2721, ext. 103
th******@***il.com
http://www.arcarizona.org

Independent Living
To find the contact information for the Statewide
Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
(713) 520-0232 (V)
(713) 520-5136 (TTY)
il**@**ru.org
http://www.ilru.org
To find the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0334 (V)
(202) 207-0340 (TTY)
nc**@**il.org
http://www.ncil.org

Learning Disabilities
Learning Disabilities Association of Arizona
18001 N. 79th Ave., E-71
Glendale, AZ, 85308
(623) 206-2896
rc*******@*******************st.org
https://ldaamerica.org/lda-chapters/arizona/

Mediation
Arizona Department of Education
Exceptional Student Services
1535 W. Jefferson
Phoenix, AZ, 85007
(602) 364-4011
http://www.ade.az.gov

Mental Health
Mental Health Association of Arizona
6411 E. Thomas Road
Scottsdale, AZ, 85251
(480) 994-4407, ext. 11
ab*****@********na.org
http://www.mhaarizona.org
Arizona Alliance for the Mentally Ill
NAMI Arizona
2210 N. 7th Street
Phoenix, AZ, 85006-1604
(800) 626-5022
(602) 244-8166
na****@****az.org
http://namiarizona.org

Mental Health – Youth
Division of Behavioral Health Services
Department of Health Services
150 N. 18th Avenue, Suite 200
Phoenix, AZ, 85007
(602) 364-4753
ne******@***hs.gov
http://azdhs.gov

Parent Organizations
Parent Information Network
Exceptional Student Services
Arizona Department of Education
3300 N. Central Ave.
Phoenix, AZ 85012
(800) 237-3007
(602) 542-4013
be*********@**ed.gov
http://www.azed.gov/special-education/
Enhancing Arizona’s Parent Networks (EAPN)
Exceptional Student Services
Arizona Department of Education
2384 N. Steves Boulevard
Flagstaff, AZ, 86004
(623) 329-3089
http://www.ade.az.gov/ess/eapn/
Arizona Congress of Parents and Teachers, Inc.
2721 N. 7th Avenue
Phoenix, AZ, 85007
(602) 279-1811
az***@*********el.com
http://www.azpta.org
Raising Special Kids
5025 E. Washington St., Suite 204
Phoenix, AZ, 85034-2005
(800) 237-3007 (in AZ only)
(602) 242-4366
in**@****************ds.org
http://www.raisingspecialkids.org
Parent-to-Parent
P2P at Raising Special Kids
See listing for the Parent Training and Information Center.
Partners in Policymaking
Pilot Parents of Southern Arizona
2600 N. Wyatt Drive
Tucson, AZ, 85712
(877) 365-7220
(520) 324-3150
pp**@**********ts.org
http://www.pilotparents.org

Preschool, Disabilities
Arizona Department of Education
Early Childhood Education
1535 W. Jefferson Street, Bin 15
Phoenix, AZ, 85007-3280
(602) 542-2727
va***********@**ed.gov
http://www.ade.az.gov

Protection & Advocacy
Arizona Center for Disability Law
100 N. Stone St, Suite 305
Tucson, AZ, 85701
(520) 327-9547 (V/TTY)
(800) 927-2260
ce****@*************aw.org
http://www.azdisabilitylaw.org

Relay Services
(800) 842-4681 (V)
(800) 367-8939 (TTY); 711 (TTY)
(800) 842-6520 (Speech to Speech)

Special Education
Exceptional Student Services
Arizona Department of Education
1535 W. Jefferson Street, Bin 24
Phoenix, AZ, 85007
(602) 542-4013
co*************@**ed.gov
http://www.ade.az.gov/ess/

Special Format Library
Arizona State Library
Archives and Public Records
Braille and Talking Book Division
1030 N. 32nd Street
Phoenix, AZ, 85008
(800) 255-5578
(602) 255-5578
bt**@****az.us
http://azlibrary.gov/talkingbooks/contact

Speech, Language, and Hearing
ArSHA (The Arizona Speech-Language-Hearing Association)
P.O. Box 12334
Tempe, AZ, 85284
(602) 354-8062
of****@***ha.org
http://www.arsha.org

State Web Site
Connect with your state’s official website to find all manner of state
agencies and information, including how to contact your governor
and/or your representatives in the Senate and House:
http://az.gov/

Transition Services
Rehabilitation Services Administration
1789W Jefferson 2nd Floor NW
Site 930A
Phoenix, AZ, 85007
(602) 542-0751
(602) 463-9002 (cell)
bs*****@***es.gov

UCEDD
Institute for Human Development
Northern Arizona University
P.O. Box 5630
Flagstaff, AZ, 86011
(928) 523-4791
(928) 523-1695 (TTY)
Th********@*au.edu
http://nau.edu/sbs/ihd/
Sonoran UCEDD
University of Arizona
1521 E. Helen St.
PO Box 210155H
Tucson, AZ, 85721
http://sonoranucedd.fcm.arizona.edu

Vocational Rehabilitation
Rehabilitation Services Administration
Department of Economic Security
1789 W. Jefferson, 2nd Floor, NW (930A)
Phoenix, AZ, 85007
(800) 563-1221
(602) 542-3332
az***@***es.gov
https://www.azdes.gov/rehabilitation_services/

Other Organizations
Easter Seals Arizona
Various locations
(520) 327-1529
http://www.easterseals.com/blakefoundation/
2-1-1 Arizona
2200 N. Central Avenue, Suite 601
Phoenix, AZ, 85004
2-1-1 (in AZ)
(877) 211-8661 (anywhere)
fi*******@*ir.org
http://www.211arizona.org
VSA arts of Arizona
3321 N. Chapel Avenue
Tucson, AZ, 85716
(520) 795-6502
vs***@***az.org
http://www.vsaaz.org

Arkansas

Abby Bell

My name is Abby Bell. My son Turner was diagnosed with Smith-Magenis Syndrome when he was three years old in 2016. He is the third of four children. Life with SMS isn’t easy but we sure love Turner and we can’t imagine life without him. We found the PRISMS website almost immediately after getting his diagnosis. It was a huge help! We were able to learn and gain hope from the things that we read. We attended the PRISMS conference in 2018 and I can’t say enough good things about it. We met so many amazing people and discovered a whole new family and support group that we didn’t even know we were missing.

I’m so grateful to be a regional representative for PRISMS. I hope that I can be a help and support for you. Please reach out with whatever questions or concerns you may have. I am here to listen, help and support you. Welcome!

Email: ar******@*******ms.org

Arkansas Resources

ADA Center
Southwest ADA Center
TIRR Memorial Hermann – ILRU
1333 Moursund
Houston, TX 77030
(713) 797-7171/(800) 949-4232
sw*****@**ru.org
http://www.southwestada.org/

Assistive Technology
ICAN Arkansas
900 W. 7th St.
Little Rock, AR 72201
9501) 666-8868/(800) 828-2799
http://ar-ican.org/

Autism
Arkansas Autism Resource & Outreach Center
322 Main St., Suite 501
Little Rock, AR 72201
(501) 454-8542/(800) 342-2923
dd******@**rk.edu
http://aaroc.org/
Autism Speaks
http://communities.autismspeaks.org/site/c.ihLPK1PDLoF/b.7501055/k.6BE9/Autism_Speaks_in_Arkansas.htm

CHIP
(Health care for low-income uninsured children)
(888) 474-8275
http://www.arkidsfirst.com/home.htm

D D Council
Arkansas DD Council
(501) 682-2897
DD******@**********as.gov
http://www.ddcouncil.org/

Developmental Disabilities
Arkansas Department of Human Services
Division of Developmental Disabilities Services
PO Box 1437, Slot N505
Little Rock, AR 72203
(503) 683-0870
http://humanservices.arkansas.gov/ddds/Pages/default.aspx

Early Intervention
First Connections
(800) 643-8258
in**@**************ns.gov
https://dhs.arkansas.gov/dds/firstconnectionsweb/#fc-home

Independent Living
Independent Living Services
615 E. Robins St.
Conway, AR 72032
(501) 327-5234
http://indliving.org/#&panel1-1

Intellectual & Developmental Disabilities
The ARC Arkansas
(501) 375-7770
th************@****rk.org

Learning Disabilities
Learning Disabilities Association of Arkansas
PO Box 23514
Little Rock, AR 72221
(501) 666-8777
http://www.ldarkansas.org/
MediationArkansas Department of Education
Special Education Unit
1401 W. Capitol Ave.
Victory Building, Suite 450
Little Rock, AR 72201
(510) 324-9939/(866) 273-3959
https://arkansased.gov/divisions/learning-services/special-education/dispute-resolution/mediationiep-facilitation

Mental Health
Mental Health Council of Arkansas
501 Woodland, Suite 136S
Little Rock, AR 72201
(501) 372-7062
mh**@**ca.org
http://www.mhca.org/
Arkansas Department of Human Services
Division of Behavioral health Services
305 S. Palm St.
Little Rock, AR 72205
(501) 686-9164
https://humanservices.arkansas.gov/about-dhs/daabhs/behavioral-health-services
Mental Health – YouthArkansas Department of Human Services
Division of Behavioral health Services
305 S. Palm St.
Little Rock, AR 72205
(501) 682-1001
https://humanservices.arkansas.gov/about-dhs/daabhs/behavioral-health-services

Parent Organizations
Arkansas PTA
PO Box 1015
North Little Rock, AR 72115
(501) 753-5247
of****@*********TA.org
http://www.arkansaspta.org/
The Center for Exceptional Families
1702 Stone St., Suite A
Jonesboro, AR 72401
(888) 360-9654
Check website for local contacts
http://www.thecenterforexceptionalfamilies.org/
Partners in Policymaking
Arkansas Developmental Disabilities Council
5800 W 10th St., Suite 805
Little Rock, AR 72204
(501) 661-2519/(800) 462-0599
ma**********@******as.gov
http://www.ddcouncil.org/

Preschool, Disabilities
Arkansas department of Education
Special Education Unit
1401 W Capital Ave.
Victory Building, Suite 450
Little Rock, AR 72201
(501) 682-4221
https://arksped.k12.ar.us/index.html

Protection & Advocacy
Disability Rights Center of Arkansas
400 W. Capitol, Suite 1200
Little Rock, AR 72201
(501) 296-1775/(800) 482-1174
http://disabilityrightsar.org/

Relay Services
(800) 285-1121 (V)
(800) 285-1131 (TTY); 711 (TTY)
(866) 656-2966 (Speech to Speech)
(866) 656-1842 (Spanish)

Special Education
Arkansas Department of Education
Special Education Unit
1401 Capitol Ave.
Victory Building, Suite 450
Little Rock, AR 72201
(501) 682-4221
https://arksped.k12.ar.us/index.html

Special Format Library
Arkansas State Library
900 Capitol, Suite 100
Little Rock, AR 72201
(501) 682-2053
http://www.asl.lib.ar.us/#

Special Health Care Needs
Arkansas Department of Human Services
Division of Developmental Disabilities Services
PO Box 1437, Slot N505
Little Rock, AR 72203
(501) 682-1001
http://humanservices.arkansas.gov/ddds/Pages/DDDSservices.aspx

Speech, Language, and Hearing
Arkansas Speech-Language-Hearing Association
PO Box 24103
Little Rock, AR 72221
(501) 244-0621
ar****@****ha.org
http://www.arksha.org/

Transition Services
Arkansas Transition Services
Check website for county office locations and contacts
http://www.arkansastransition.com/

UCEDD
Partners for Inclusive Communities
University of Arkansas at Fayetteville
322 Main, Suite 501
Little Rock, AR 72201
(501) 301-1100/(800) 342-2923
pa******@**rk.edu
https://uofapartners.uark.edu/

Vocational Education and Rehabilitation
Arkansas Department of Career Education
(501) 682-1500
Check website for local contacts
http://ace.arkansas.gov/arRehabServices/programs/fieldServices/Pages/vocationalRehabilitation.aspx

Other Organizations
Easter Seals Arkansas
3920 Woodland Heights Rd.
Little Rock, AR 72212
(501) 227-3600
in**@***********ar.com
http://www.easterseals.com/arkansas/?referrer=https://www.google.com/
Arkansas Council for Exceptional Children
Check website for specific divisions
https://www.arkansascec.com/
Special Olympics Arkansas
2115 Main St.
North Little Rock, AR 72114
(501) 771-0222/(800) 722-9063
http://www.specialolympicsarkansas.org/

California

Charlene Liao

CA (Palo Alto)

I am Charlene Liao, Ph.D. training in molecular biology and immunology. I live in San Francisco Bay Area in Northern California. I have been with PRISMS for over 17 years and served as PRISMS Board Member for a period of time. My daughter Connie was diagnosed with SMS when she was 6 years old, even though we knew there was something unusual about her since she was born and despite having best access to doctors and specialists at UCSF and Stanford. She now goes to an adult day program. My husband is a professor at Stanford who together with his students have made significant progress in understanding the neurological abnormalities associated with SMS through studies in mice. Both of us are involved with the PRISMS Research Roundtable and SMS Research Foundation to some extent.

Email: ca********@*******ms.org

Trevor Gritman

CA (Lakeside)

My name is Trevor Gritman. My son is Boston, and he is 7 years old! He was diagnosed with SMS at 10 months old. We have been affiliated with PRISMS for about 6 years, shortly after his diagnosis. When we attended the 2012 International Conference in Colorado, we found it to be a wonderful resources as it provided us much of the information that we could not find anywhere else. We felt lost until we found PRISMS. When thinking about being a representative, I noticed that there were not many SMS dads volunteering and feel that my perspective might be received well by fathers of newly diagnosed children.

Email: ca********@*******ms.org

Laurie Bellet

CA (San Francisco)

My name is Laurie Bellet. My daughter, Ariel, was born in 1985 and has been diagnosed with SMS. In 1995, I joined the PRISMS Board. Our family greatly benefited from early SMS research. Ariel was one of the first confirmed with the RAI1 deletion. Professional and personal connections through PRISMS have been precious. I am a long-time teacher and have served as an IEP advocate for several children in our SMS community both locally and long-distance. I am an expert in navigating resources in northern California and connecting with specialists who have SMS experience. I have also conferenced and facilitated strategies and relationships with classroom teachers who are challenged by students with SMS. Ariel has 2 older brothers, a niece, a nephew and a boyfriend!

Email: ca********@*******ms.org

Diane Erth

CA (San Diego)

My name is Diane Erth, and I am the San Diego Regional Representative for PRISMS as well as a newly appointed PRISMS Board Member. I live in San Diego, Ca with my husband, Joe, and my 8 year old son, Max. I am a Stay at Home Mom but I feel I deserve a more elaborate title as I find myself wearing many hats and often several at the same time.

Max was diagnosed with Smith-Magenis Syndrome at just 30 days old. We did a lot of research online and found PRISMS. We reached out to the then President and were able to ask questions about his daughter. It was good to talk to another parent about our concerns.

I have made it a personal goal to welcome and offer support to all SMS families and to be available to answer questions and help the newly diagnosed families. Sometimes, venting to another SMS parent is what is needed. While I’m no pro, I do have knowledge of the services available in my area and am happy to help others get the support that they need in raising a child with SMS.

Please feel free to call or email me if you need anything. I can’t promise I have all the answers, in fact, I CAN promise that I don’t, but I am ready and willing to help other families on this wild journey called SMS.

Email: ca********@*******ms.org

California SMS Clinic

San Diego

Pediatric Neurology/Smith-Magenis Clinic

Rady Children’s Hospital
Ages seen: All
Clinic Director: Dr. Gail Reiner, DNP, FNP-C
Physician Consultant: Kristen Wigby, MD
Clinic Coordinator: Marlene Uriarte
Email: ge******@*********sd.edu
Phone: 858-966-5819
Web: https://www.rchsd.org/

California Resources

ADA Center
Pacific ADA Center
ad*****@********ic.org
www.adapacific.org

Assistive Technology
California Assistive Technology System
Department of Rehabilitation
www.dor.ca.gov

Autism
Autism Society of California Regional Affiliates

CHIP Program
(Health care for low-income uninsured children)
Insure Kids Now
www.insurekidsnow.gov/coverage/ca/index.html

Community Parent Resource Center
Parents CAN
pa*****@********an.org
www.parentscan.org
Fiesta Educativa, Inc. (Serving E. Los Angeles)
(323) 726-2418
in**@*************va.org
www.fiestaeducativa.org

Disability Rights Education & Defense Fund
(510) 644-2555
in**@***df.org
www.dredf.org

Fuerza, Inc.
fu***@*******nc.org
www.fuerzainc.org

Chinese Parents Association for the Disabled (Serving Los Angeles and Orange Counties)
www.cpad.org

Vietnamese Parents of Disabled Children Association (Serving Orange and Los Angeles County)
(714) 527-9216
co*****@***ca.org

D D Council
California State Council on Developmental Disabilities
co*****@*****ca.gov
www.scdd.ca.gov

Developmental Disabilities
(providing services and support for infants, children, and adults with developmental disabilities)
Department of Developmental Services
California Health and Human Services Agency
in**@****ca.gov
www.dds.ca.gov

Early Intervention
Early Start
Department of Developmental Services
(800) 515-2229
ea********@****ca.gov
www.dds.ca.gov/services/early-start

Epilepsy
Epilepsy Foundation of San Diego County
in**@**************go.org
www.epilepsysandiego.org
Epilepsy Foundation
301-459-3700
Co*******@*fa.org
www.epilepsy.com

Independent Living
Juvo
Provider of behavioral health services for individuals with special needs to lead independent lives and achieve their full potential.
www.juvobh.org
California State Independent Living Council
SI**@********ca.gov
www.calsilc.ca.gov
Independent Living Research Utilization (IRLU)
Find the California location near you
www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/CA

Intellectual & Developmental Disabilities
The Arc of California
www.thearcca.org

Learning Disabilities
Learning Disabilities Association of California
ldacalifornia.org

Mediation
Department of Education
Special Education Division
sp*************@****ca.gov
www.cde.ca.gov/sp/se

Mental Health
Mental Health Association in California
(916) 557-1167
www.mhac.org
United Advocates for Children and Families
(866) 643-1530 (916) 643-1530
in**@******pe.org
www.uacf4hope.org

Mental Health
NAMI California
in**@****ca.org
namica.org
Department of Mental Health
MM*****************@*****ca.gov
www.dhcs.ca.gov/services/Pages/MentalHealthPrograms-Svcs.aspx

Mental Health -Youth
California Department of Mental Health
www.dhcs.ca.gov/services/MH/Pages/Specialty-Mental-Health-Services-for-Children-and-Youth.aspxhttp://www.childsworld.ca.gov

Parent Teacher Association (PTA)
California State PTA
in**@***ta.org
www.capta.org

Disability Rights Education and Defense Fund, Inc. (DREDF)
in**@***df.org
http://www.dredf.org

MATRIX Parent Network and Resource Center
in**@***********ts.org
www.matrixparents.org

Parents Helping Parents
in**@*hp.com
www.php.com

Rowell Family Empowerment of Northern CA
(530) 226-5129
www.rfenc.org

Support for Families of Children with Disabilities
in**@****************es.org
www.supportforfamilies.org

Team of Advocates for Special Kids (TASK)
ta**@****ca.org
www.taskca.org

Team of Advocates for Special Kids (TASK) San Diego
3180 University Ave. Ste. 430
San Diego, CA, 92104
(877) 609-3218 (619) 282-0846
ta**@****ca.org
http://www.taskca.org

Preschool, Disabilities
California Department of Education
www.cde.ca.gov/sp/cd/re/itfoundations

Protection & Advocacy
Disability Rights California
in**@****************ca.org
http://www.disabilityrightsca.org

Relay Services
(800) 735-2922 (V)
(800) 735-2929 (TTY); 711 (TTY)
(800) 854-7784 (Speech to Speech)

Special Education
Special Education Division
California Department of Education
www.cde.ca.gov/sp/se

Special Health Care Needs
Children’s Medical Services Branch
www.dhcs.ca.gov/services/Pages/CMS

Speech, Language, and Hearing
California Speech-Language-Hearing Association
(CSHA)
(representing speech-language pathologists and audiologists)
cs**@**ha.org
www.CSHA.org

Transition Services
Transition Services and Work Ability
Special Education Division
California Department of Education
www.cde.ca.gov/sp/se/sr/wrkabltyI

UCEDD
Tarjan Center, a UCEDD
University of California, Los Angeles
www.semel.ucla.edu/tarjan

UCEDD at Children’s Hospital Los Angeles
University of Southern California
www.uscucedd.org

UCEDD at the UC Davis MIND Institute
UC Davis Health System
916-703-0280
www.ucdmc.ucdavis.edu/ddcenter

Other Organizations
Easter Seals
Cu*************@******al.org
www.esnorcal.org

Family Resource Network
(Serving Amador, Calaveras, San Joaquin, Stanislaus & Tuolumne Counties)
fr*********@**cn.org
www.frcn.org

Colorado

Eric and Kim Hoffman

CO, WY, UT

We are the Hoffmans. Eric, Kim and Lynette “Nettie”. We live in a northern suburb of Denver Colorado. We are Regional Reps the states of Colorado, Wyoming and Utah. We have been members of PRISMS for over 20 years. Nettie is our only child and she has SMS. She was born in 1991 and we received our diagnosis of SMS when she was 13 months old. The support we received from Maggie Miller and Ann Smith when we received the diagnosis was extremely important to us. We met our first SMS families in person in 1997 at National Institutes of Health before the first SMS conference. We valued meeting other families that understood what we were going thru so much that when we returned home we started our own local support group with families in Colorado and Wyoming. We have attended every SMS conference and enjoy meeting with other SMS families and talking with the SMS professionals.

Email: co******@*******ms.org

Colorado Resources

ADA Center
Rocky Mountain ADA Center
3630 Sinton Road, Suite 103
Colorado Springs, CO, 80907
(719) 444-0268 (V/TTY)
(800) 949-4232 (V/TTY)
ad*****@************on.org
http://www.adainformation.org

Assistive Technology
Assistive Technology Partners
Department of Rehabilitation Medicine
University of Colorado Health Sciences Center
601 E. 18th Avenue, Suite 130
Denver, CO, 80203
(303) 315-1280
(303) 837-8964 (TTY)
(800) 255-3477
http://www.assistivetechnologypartners.org

Autism
Autism Society of Colorado
550 S Wadsworth Blvd, Ste 100
Lakewood, CO, 80226
(720) 214-0794
co*****@************do.org
http://www.autismcolorado.org

CHIP Program
(health care for low-income uninsured children)
Child Health Plan Plus (CHP+)
P.O. Box 929
Denver, CO, 80201-0929
(800) 359-1991
http://www.cchp.org/

D D Council
Colorado Developmental Disabilities Council
1120 Lincoln Street, Suite 706
Denver, CO, 80203-2117
(720) 941-0176
cd*********@******co.us
http://www.coddc.org
Developmental DisabilitiesColorado Department of Health Care Policy & Financing
Division for Intellectual and Developmental Disabilities
1570 Grant St.
Denver, CO, 80203-1818
(303) 866-2993
https://www.colorado.gov/hcpf

Early Intervention
Early Intervention Colorado
CDHS-Division for Developmental Disabilities
4055 S. Lowell Blvd.
Denver, CO, 80236
(888) 777-4041
www.eicolorado.org

Epilepsy
Epilepsy Foundation of Colorado & Wyoming
5889 Greenwood Plaza Blvd, Ste 404
Greenwood Village, CO 80111
(303) 377-9774
(888) 378-9779 (in CO)
in**@*********************ng.org
www.epilepsycoloradowyoming.org

Independent Living
For your Statewide Independent Living Council, contact:
Independent Living Research Utilization
2323 S. Shepherd, Suite 1000
Houston, TX, 77019
(713) 520-0232 (V/TTY)
il**@**ru.org
www.ilru.org/html/publications/directory/
To learn about independent living centers in your area, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0034 (V)
(202) 207-0340 (TTY)
(877) 525-3400 (toll free)
nc**@**il.org
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc of Colorado
8000 E. Prentice Avenue, Suite D-1
Greenwood Village, CO, 80111
(303) 864-9334
(800) 333-7690
http://www.thearcofco.org

Mediation
Colorado Department of Education
Exceptional Student Services
201 E. Colfax Avenue, Room 300
Denver, CO, 80203
(303) 866-6685
http://www.cde.state.co.us

Mental Health
Mental Health America of Colorado
1120 Lincoln St., Suite 1606
Denver, CO, 80203
(720) 208-2220
in**@******************do.org
http://www.mentalhealthcolorado.org/
NAMI Colorado
1100 Fillmore Street
Denver, CO, 80206-3334
(303) 321-3104
na*****@**mi.org
http://www.namicolorado.org
Colorado Federation of Families for Children’s Mental Health
P.O. Box 9086
Englewood, CO, 80111
(888) 569-7500
(303) 572-0302
https://disabilitylawco.org/resource/federation-families-childrens-mental-health
EMPOWER Colorado (Mental Health)
c/o Ability connection Colorado
801 S. Yosemite Street
Denver, CO, 80230
(303) 691-9339
in**@***********************do.org
http://www.abilityconnectioncolorado.org/empowercolorado/

Mental Health – Youth
Division of Mental Health Services
Department of Human Services
3824 W. Princeton Circle
Denver, CO, 80236
(303) 866-7400
https://www.colorado.gov/cdhs

Parent Organizations
Community Parent Resource Center
Denver Metro Community Parent Resource Center
2600 S. Parker Rd., Suite 332
Aurora, CO, 80014
(303) 365-2772
in**@*************rc.org
http://www.denvermetrocprc.org
Colorado PTA
7859 W. 38th Avenue
Wheat Ridge, CO, 80033
(303) 420-7820
(888) 225-8234
of****@***ta.org
http://www.copta.org
Parent Training and Information Center (PTI)
PEAK Parent Center
611 N. Weber, Suite 200
Colorado Springs, CO, 80903
(719) 531-9400
(800) 284-0251
(719) 531-9403 (TTY)
in**@********nt.org
http://www.peakparent.org
Parent to Parent of Colorado
801 Yosemite Street
Denver, CO, 80230
(877) 472-7201
in**@****co.org
http://www.p2p-co.org

Preschool Disabilities
Early Childhood Initiatives
Colorado Department of Education
201 E. Colfax Avenue, Room 305
Denver, CO, 80203
(303) 866-6709
(303) 866-6712
(888) 777-4041
http://www.cde.state.co.us

Protection & Advocacy
Disability Law Colorado
Denver Office
(800) 288-1376/(303) 722-0300
Grand Junction Office
(800) 531-2105/(970) 241-6371
https://disabilitylawco.org/

Relay Services
(800) 659-3656 (V)
(800) 659-2656 (TTY); 711 (TTY)
(877) 659-4279 (Speech to Speech)

Special Education
Exceptional Student Services Unit
Colorado Department of Education
201 E. Colfax Avenue
Denver, CO, 80203
(303) 866-6694
http://www.cde.state.co.us

Special Format Library
Colorado Talking Book Library
180 Sheridan Boulevard
Denver, CO, 80226-8097
(303) 727-9277
(800) 685-2136
ct*******@**********co.us
http://www.cde.state.co.us/ctbl

Special Health Care Needs
Health Care Program For Children with Special Needs (HCP)
Department of Public Health and Environment
4300 Cherry Creek Drive South, Room A410
Denver, CO, 80246-1530
(303) 692-2370
(800) 688-7777
http://www.cdphe.state.co.us
Family Voices Colorado
13199 East Montview Blvd, Suite 200
Aurora, CO, 80045
(303) 733-3000
(800) 881-8272
in**@************co.org
http://familyvoicesco.org

Speech, Language, and Hearing
Colorado Speech-Language-Hearing Association
P.O. Box 345
Sedalia, CO, 80135
(720) 733-9097
cs******@*ol.com
http://www.cshassoc.org

State Web Site
Connect with your state’s official website to find all
manner of state agencies and information, including how
to contact your governor and/or your representatives in
the Senate and House:
https://www.colorado.gov/

Transition Services
Exceptional Student Leadership Unit
Colorado Department of Education
201 E. Colfax Avenue
Denver, CO, 80203
(303) 866-6799
http://www.cde.state.co.us/cdesped/transition

UCEDD
JFK Partners
University of Colorado Denver
School of Medicine
13121 E. 17th Ave, C234
Aurora, CO, 80045
(303) 724-5266
http://www.jfkpartners.org

Vocational Education & Rehabilitation
Colorado Community College System
9101 E. Lowry Boulevard
Denver, CO, 80230-6011
(303) 620-4000
Division of Vocational Rehabilitation
Department of Labor and Employment
Check website for departments and local offices
https://www.colorado.gov/pacific/dvr/

Other Organizations
Easter Seals Colorado
5755 W. Alameda Avenue
Lakewood, CO, 80226
(303) 233-1666 (V/TTY)
(800) 875-4732
http://www.eastersealscolorado.org
VSA Colorado
Access Gallery/Studio
909 Santa Fe Drive
Denver, CO, 80204
(303) 777-0797
in**@***********ry.org
http://accessgallery.org/

Connecticut

Leah Baigell

CT, RI, MA, VT, NH, ME

My name is Leah Baigell, I live in Massachusetts and represent PRISMS as a Regional Representative covering Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont. I’ve been involved with PRISMS since 2007, when my son Zach (1992) was first diagnosed with SMS. Most recently, I worked with several other’s on PRISMS residential guidebook that was presented at the Summer 2016 PRISMS conference. (It can be downloaded at no cost on prisms.org). For work, I lead sibling support groups for families who have children on psychiatric units, talking mainly about the challenges the siblings at home face. I have two children – Zach, who is 25 and has SMS, spent many years at residential schools before moving into a group home at 22, and Max who is 28 and is a Speech & Language Pathologist working with middle school kids who have developmental delays and behavioral challenges. My husband, Henry, is in software development and taught Zach much about computers. As a family we enjoy biking, nature walks, and playing in the ocean.

Email: co*********@*******ms.org

Glen & Kristine Braden

CT
We are Glen and Kristine Braden and live in southern Connecticut. We got involved in PRISMS after the diagnosis of our adopted son, Tully, when he was 11 years old…
readmore email

Connecticut Resources

ADA Center
New England ADA Center
180-200 Portland Street, Suite 1
Boston , MA , 02114
(800) 949-4232 V/TTY)
(617) 695-0085 (V/TTY)
ad*****@***********da.org
http://www.newenglandada.org

Assistive Technology
Connecticut Tech Act Project (CTTAP)
55 Farmington Ave., 12th Floor
Hartford, CT 06105
(800) 537-2549 (in CT)
(860) 424-4881
(860) 424-4839 (TTY)
http://cttechact.com/#sthash.L4dfJrZ1.dpbs

CHIP Program
(Health care for low-income uninsured children)
HUSKY Plan
c/o Department of Social Services
55 Farmington Ave.
Hartford, CT 06105–3730
(877) 284-8759
http://www.ct.gov/hh/site/default.asp

DD Council
Connecticut Council on Developmental Disabilities
460 Capitol Avenue
Hartford , CT , 06106-1308
(800) 653-1134 (in CT)
(860) 418-6160
(860) 418-6172 (TTY)
Mo********@**.gov
http://www.ct.gov/ctcdd/site/default.asp

Developmental Disabilities
Department of Developmental Services (DDS)
460 Capitol Avenue
Hartford , CT , 06106
(860) 418-6000
dd******@**.gov
http://www.ct.gov/dds

Early Intervention
Connecticut Birth to Three System
Department of Developmental Services
460 Capitol Avenue
Hartford , CT , 06106-1308
(800) 505-7000
http://www.birth23.org

Epilepsy
Epilepsy Foundation of Connecticut, Inc.
386 Main Street
Middletown , CT , 06457
(800) 899-3745
(860) 346-1924
ef**@*******al.net
http://www.epilepsyct.com

Independent Living
Connecticut Association of Centers for Independent Living
151 New Park Avenue
Hartford , CT , 06106
(860) 656-0430
gw*********@***il.net
http://www.cacil.net

Intellectual & Developmental Disabilities
The ARC of Connecticut
200 Research Pkwy
Meriden, CT, 06450
(203) 514-3028
https://thearcct.org/

Mediation
Connecticut Department of Education
Bureau of Special Education
Due Process Unit
165 Capitol Avenue
Hartford , CT , 06106-1630
(860) 713-6935
https://portal.ct.gov/SDE/Special-Education/Bureau-of-Special-Education/Legal-and-Due-Process

Mental Health
Mental Health Connecticut
61 S. Main St., Suite 100
West Hartford, CT 06107
(860) 529-1970
in**@****nn.org
http://www.mhconn.org/contact/
NAMI Connecticut
576 Farmington Avenue
Hartford , CT , 06105
(800) 215-3021
(860) 882-0236
na******@****ct.org
http://www.namict.org

Mental Health – Youth
Department of Children and Families
505 Hudson Street
Hartford , CT , 06106
(800) 842-2288 (in CT)
(860) 550-6683
co**************@**.gov
https://portal.ct.gov/dcf

Parent Resources
AFCAMP, Hartford-New Haven CPRC
60 Weston St., Ste B
Hartford , CT , 06120
(860) 548-9959
http://www.afcamp.org
Parent Teacher Association (PTA)
Connecticut Parent-Teachers Association
Wilbur Cross Commons Building, Suite 12
60 Connolly Parkway
Hamden , CT , 06514-2519
(203) 281-6617
of****@***ta.org
http://www.ctpta.org
Parent Training and Information Center (PTI)
Connecticut Parent Advocacy Center (CPAC)
338 Main Street
Niantic , CT , 06357
(800) 445-2722 (in CT)
(860) 739-3089
cp**@*****nc.org
http://www.cpacinc.org
Parent-to-Parent
PATH Parent to Parent of CT
P.O. Box 117
Northford , CT , 06472
(800) 399-7284 (in CT)
(203) 234-9554
na***@*ol.com
http://www.pathct.org

Preschool, Disabilities
State Department of Education
165 Capitol Avenue
Hartford , CT , 06106
(860) 713-6543
http://www.sde.ct.gov

Protection & Advocacy
Office of Protection & Advocacy for Persons with Disabilities
60 B Weston Street
Hartford , CT , 06120-1551
(800) 842-7303 (V/TTY in CT)
(860) 297-4300
(860) 297-4380 (TTY)
http://www.ct.gov/opapd

Special Education
Bureau of Special Education
Department of Education
165 Capitol Avenue, Room 360
Hartford , CT , 06106
(860) 713-6912
http://portal.ct.gov

Special Format Library
Connecticut State Library
Library for the Blind and Physically Handicapped
198 West Street
Rocky Hill , CT , 06067
(800) 842-4516
(860) 721-2020
http://ctstatelibrary.org/lbph/

Special Health Care Needs
Connecticut Department of Public Health
410 Capitol Ave.
Hartford, CT 06134
(860) 509-8074
http://www.ct.gov/dph/cwp/view.asp?a=3138&Q=387702&PM=1

Speech, Language, and Hearing
Connecticut Speech-Language-Hearing Association
124 Kennerson Road
Eastford , CT , 06242
(860) 666-6900
cs**@*************ng.org
http://www.ctspeechhearing.org

Transition Services
Bureau of Special Education
Department of Education
165 Capitol Avenue
P.O. Box 2219
Hartford , CT , 06145-2219
(860) 713-6923
pa***************@**.gov
http://www.sde.ct.gov/sde

UCEDD
A.J. Pappanikou UCEDD
263 Farmington Avenue, MC6222
Farmington , CT , 06030-6222
(866) 623-1315
(860) 679-1500
(860) 679-1502 (TTY)
contactus@ uconnucedd.org
http://www.uconnucedd.org

Vocational Rehabilitation
Department of Rehabilitation Services
55 Farmington Ave., 12th Fl.
Hartford, CT 06105
http://www.ct.gov/dors/site/default.asp

Other Organizations
WeCAHR (Western Connecticut Association for Human Rights)
325 Main Street
Danbury , CT , 06810
(203) 792-3540
pt****@****hr.org
http://www.wecahr.org

Easter Seals Connecticut
733 Summer Street – suite 104
Stamford , CT , 06901
(203) 388-2196
ds******@***********ct.org
http://www.ct.easterseals.com

The Special Kids Support Center
Connecticut Children’s Medical Center
282 Washington Street
Hartford , CT , 06106
(877) 545-1944 (in CT)
(860) 545-9000
http://www.ccmckids.org

Disabilities Network of Eastern Connecticut
19 Ohio Avenue – suite 2
Norwich , CT , 06360
(860) 823-1898
http://www.dnec.org

Delaware

Linda Johnson

My name is Linda Johnson.  I’m mom to Amanda, who was born in 1986.  She was diagnosed with SMS when she was 14.  I spent those first 14 years going to hundreds of doctors who diagnosed her with things ranging from autism, ADHD, failure to thrive, and even suggested fetal alcohol syndrome.  As you can imagine, I was pretty upset about that one since I didn’t even touch a Tylenol during pregnancy, let alone alcohol!  I had pretty much given up when I happened to take her to an eye doctor appointment.  She had to have an exam to find her prescription and the young optometrist asked me if I had ever had her genetically tested.  I actually had done so many years ago.  She gently urged me to go to a geneticist, so I did, reluctantly, because I expected that it would once again show nothing conclusive.  This time, testing showed the deletion and Amanda was diagnosed with SMS.  I found out later that optometrist had completed her residency at Baylor Hospital and was part of the team that did some early research.  What were the chances of us seeing that one eye doctor who could recognize SMS?

Amanda attended high school at the Davidson School in Elwyn, PA, and once graduated, move to a group home here in Delaware.

We spend a lot of time together on weekends and during the evenings on the phone.  I’m proud to be the Delaware regional representative for PRISMS.  It’s such a great organization full of love and good people. I hope to support other families and help provide a connection when it is needed.

Email: de******@*******ms.org

Delaware Resources

ADA Center
Mid-Atlantic ADA Center
401 North Washington Street, Suite 450
Rockville, MD, 20805
(800) 949-4232 (V/TTY)
(301) 217-0124 (V/TTY)
http://www.adainfo.org

Assistive Technology
Delaware Assistive Technology Initiative
461 Wyoming Road
Newark, DE, 19716
(800) 870-3284 (in DE)
(302) 651-6790
(302) 831-0354 (TTY)
da**@*******el.edu
http://www.dati.org

CHIP Program
(health care for low-income uninsured children)
Delaware Healthy Children Program
P.O. Box 950
New Castle, DE, 19720-9914
(800) 996-9969
http://www.state.de.us/dhss/dss/

D D Council
Delaware Developmental Disabilities Council
Margaret M. O’Neill Building, 2nd Floor
410 Federal Street, Suite 2
Dover, DE, 19904
(302) 739-3333
pa*********@******de.us
http://www.ddc.delaware.gov

Developmental Disabilities
Division of Developmental Disabilities Services
Delaware Health and Social Services
1056 S. Governors Avenue, Suite 101
Dover, DE, 19904
(302) 744-9600
dh******@******de.us
http://www.state.de.us/dhss/ddds/index.html

Early Intervention
Birth to Three Early Intervention System
Department of Health and Social Services
1901 N. DuPont Highway
New Castle, DE, 19720
(302) 255-9135
ro*******************@******de.us
http://www.state.de.us/dhss/dms/epqc/birth3/directry.html

Epilepsy
Epilepsy Foundation of Delaware
Tower Office Park
240 N. James Street, Suite 104
Newport, DE, 19804
(877) 369-2266
(302) 999-9313
ef*@**de.org
http://epilepsy.com/delaware

Independent Living
To find out the contact information for the Statewide Independent Living
Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
1333 Moursond
Houston, TX, 77030
(713) 520-0232 (V)
(713) 520-5136 (TTY)
il**@**ru.org
http://www.ilru.org
To find out the contact information for centers for independent living (CILs) in your state, contact: National Council on Independent Living
2013 H Street NW – 6th Floor
Washington, DC, 20006
(202) 207-0334 (V)
(202) 207-0340 (TTY)
nc**@**il.org
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc of Delaware
2 S Augustine St., Suite B
Wilmington, DE, 19804
(302) 996-9400/(844) 344-6524
http://www.thearcofdelaware.org/

Mediation
Council for Exceptional Children
2900 Crystal Dr., Suite 100
Arlington, VA 22202
(888) 232-7733
(302) 735-4210
https://www.doe.k12.de.us

Mental Health
Division of Substance Abuse and Mental Health
Delaware Health and Social Services
Main Administration Building
1901 N. DuPont Highway
New Castle, DE, 19720
(302) 255-9399
https://dhss.delaware.gov/dsamh/
Mental Health Association in Delaware
100 W. 10th Street, Suite 600
Wilmington, DE, 19801
(800) 287-6423 (In DE)
(302) 654-6833
in*********@*****de.org
http://www.mhainde.org

Mental Health – Children
Division of Child Mental Health Services
Department of Services for Children, Youth, and Their Families
1825 Faulkland Road, Building 1
Wilmington, DE, 19805-1195
(302) 633-2600
PB********@******de.us
http://kids.delaware.gov/pbhs/pbhs.shtml

Organizations for Parents
Parent Information Center of Delaware (PIC)
404 Larch Circle
Wilmington, DE, 19804
(888) 547-4412
(302) 999-7394
http://www.picofdel.org
Parent Teacher Association (PTA)
Delaware Congress of Parents and Teachers
925 Bear-Corbitt Road, Suite 101
Bear, DE, 19701
(302) 838-8770
de*******@*ta.org
http://www.delawarepta.org
P2P at Delaware Family Voices
61 Corporate Circle
New Castle, DE, 19720
(302) 221-5360
an**@**fv.org
http://defv.org

Preschool, Disabilities
Council for Exceptional Children
2900 Crystal Dr., Suite 100
Arlington, VA 22202
(888) 232-7733
https://www.doe.k12.de.us

Protection & Advocacy
Community Legal Aid Society, Inc.
Community Service Building
100 W. 10th Street, Suite 801
Wilmington, DE, 19801
(302) 575-0660
http://www.declasi.org
Partners in Policymaking of Delaware
Developmental Disabilities Council
Margaret M. O’Neill Building, 2nd Floor
410 Federal Street, Suite 2
Dover, DE, 19901
(302) 739-3333
http://ddc.delaware.gov/

Special Format Library
Delaware Division of Libraries
Library for the Blind and Physically Handicapped
43 S. DuPont Highway
Dover, DE, 19901
(V/TTY)(800) 282-8676
(302) 739-4748
jo**********@******de.us
http://libraries

Special Health Care Needs
Children with Special Health Care Needs
Bureau of Maternal and Child Health
Division of Public Health
417 Federal Street
Dover, DE, 19901
(800) 464-4357 (Helpline)
(302) 741-2980
https://www.dhss.delaware.gov/dph/chca/dphcshcn.html
Division of Public Health & duPont Hospital for Children
Office of EMS
Blue Hen Corporate Center
655 Bay Road, Suite 4H
Dover, DE, 19901
(302) 744-5410
www.dhss.delaware.gov/dph/ems/ems.html
Delaware Family Voices
222 Philadelphia Pike, Suite 11
Wilmington, DE 19809
(302) 669-3030/(877) 235-3588
ps*@**fv.org
http://www.delawarefamilytofamily.org/

Speech, Language, and Hearing
Delaware Speech-Language-Hearing Association
P.O. Box 7383
Newark, DE, 19711
ds*****@**ha.org
http://dsha.org/

State Web Site
Connect with your state’s official website to find all manner of state agencies
and information, including how to contact your governor and/or your
representatives in the Senate and House:
http://www.de.gov/

UCEDD
Center for Disabilities Studies
College of Education and Human Development
University of Delaware
461 Wyoming Road
Newark, DE, 19716
(302) 831-6974
(302) 831-4689 (TTY)
mi***@**el.edu
http://www.udel.edu/cds

Vocational Rehabilitation
(302) 577-8400
Check website for local offices
http://www.dvr.delawareworks.com

Other Organizations
State Council for Persons with Disabilities
Margaret M. O’Neill Building
P.O. Box 1401
Dover, DE, 19903
http://www.scpd.delaware.gov
Governor’s Ad Council
516 W Loockerman Street
Dover, DE, 19904
(302) 739-4553
http://gacec.delaware.gov/
Easter Seals Delaware and Maryland’s Eastern Shore
61 Corporate Circle
New Castle, DE, 19720
(800) 677-3800
(302) 324-4444
pr******@***el.org
http://www.de.easterseals.com

Florida

Allison Leatzow

My name is Allison Leatzow. I live in Tallahassee, FL. My son Andrew was diagnosed with SMS in Fall of 2013 with the mutation version of SMS. After Andy was diagnosed, we went online, as everyone does, to get more information. We found the PRISMS site and immediately signed up to become members. It answered many questions and confirmed suspicions we had all along. We called and spoke with May and Randy Beall (former President of PRISMS) the next day and were able to get even more information and offers of others to connect with who had similar experiences as our son. Not long after Andy was diagnosed, we were in crisis and had to place him in our hospital’s psychiatric facility for nearly three days.

We had just received our PRISMS membership packet, and I was able to bring it to the hospital for the medical staff to read and better understand his condition. Without PRISMS, we would not have felt as accepted as we do and have resources at our fingertips.

Email: fl*****@*******ms.org

Florida Resources

ADA Center
Southeast ADA Center
1419 Mayson Street NE
Atlanta, GA, 30324
(800) 949-4232 (V/TTY)
(404) 541-9001 (V/TTY)
AD**********@*****yr.edu
http://www.adasoutheast.org

Assistive Technology
Florida Alliance for Assistive Service and Technology
3333 W Pensacola Street Building 100
Suite 140
Tallahassee, FL, 32304
(888) 788-9216
(850) 487-3278
(850) 922-5951 (TTY)
fa***@***st.org
http://faast.org/

Career & Technical Education
Florida Department of Education
Turlington Bldg., Suite 1514
325 W. Gaines St.
Tallahassee, FL, 32399
(850) 245-0505
http://www.fldoe.org/academics/career-adult-edu/career-tech-edu/additional-cte-programs-courses/special-needs

CHIP Program
PO Box 980 Tallahassee, FL 32302
(888) 540-5437
http://www.healthykids.org

D D Council
Florida Developmental Disabilities Council, Inc.
124 Marriott Drive, Suite 203
Tallahassee, FL, 32301-2981
(800) 580-7801 (in FL)
(850) 488-4180
fd**@**dc.org
http://www.fddc.org

Developmental Disabilities
Agency for Persons with Disabilities
4030 Esplanade Way, Suite 380
Tallahassee, FL, 32399-0950
(850) 488-4257
Ji*************@**********fl.us
http:// www.apd.myflorida.com

Early Intervention
Early Steps
Check website for local offices
(800) 218-0001
http://www.floridahealth.gov/alternatesites/cms-kids/families/early_steps/early_steps.html

Florida Office of Early Learning
250 Marriott Dr.
Tallahassee, FL, 32399
(866) 357-3239
http://www.floridaearlylearning.com/

Epilepsy
Epilepsy Services Program
Tampa: (813) 870-3414
Lakeland: (863) 686-5880
https://www.epilepsyservices.com/

Independent Living
Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
il**@**ru.org
http://www.ilru.org

To find the contact information for Centers for Independent Living (CILs) in your state, contact:

National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0034 (V)
(202) 207-0340 (TTY)
nc**@**il.org
http://www.ncil.org

Intellectual & Developmental Disabilities
ARC/Florida
2898 Mahan Drive, Suite 1
Tallahassee, FL, 32308
(800) 226-1155
ar**********@***il.com
http://www.arcflorida.org

Learning Disabilities
Learning Disabilities Association of Florida, Inc.
Co-Presidents:
(561) 247-0221, Cathy Einhorn
(561) 361-7495, Mark Halpert

Mediation
Florida Department of Education
(850) 245-0475
BR**@***oe.org
http://www.fldoe.org/core/fileparse.php/7674/urlt/0064540-eseparent.pdf

Mental Health
ACCESS
Department of Health and Human Services,
https://www.hhs.gov/mental-health-and-addiction-insurance-help/fl-medicaid-chip/index.html
NAMI Florida, Inc.
911 E. Park Avenue
Tallahassee, FL, 32301
(850) 671-4445
na****@****fl.org
http://www.namiflorida.org

Mental Health – Youth
Florida Department of Children and Families
ACCESS Central Mail Center
PO Box 1770
Ocala, FL 34478-1770
Check website for local office numbers
http://www.myflfamilies.com/service-programs/mental-health/childrens-mental-health-services

Parent Organizations
Community Parent Resource Center
Parent to Parent of Miami, Inc.
Community Parent Resource Center
7990 S.W. 117th Avenue, Suite 201
Miami, FL, 33183
(800) 527-9552
(305) 271-9797
in**@*******mi.org
http://www.ptopmiami.org

Parent Teacher Association (PTA)
Florida Congress of Parents and Teachers, Inc.
1747 Orlando Central Parkway
Orlando, FL, 32809
(407) 855-7604
ja****@********ta.org
http://www.floridapta.org

Parent Training and Information Center (PTI, PSN, PEN, POPIN)
2196 Main St., Suite L
Dunedin, FL 34698
(727) 523-1130
(800) 825-5736
http://fndusa.org

Preschool, Disabilities
Bureau of Exceptional Education and Student Services
Florida Department of Education
325 W. Gaines Street, Suite 601
Tallahassee, FL, 32399-0400
(850) 245-0478
ma*************@***oe.org
http://www.fldoe.org

Protection & Advocacy
Disability Rights Florida
2728 Centerview Drive
Suite 102
Tallahassee, FL , 32301
(800) 342-0823
(800) 350-4566 (Spanish and Creole Speaking Clients)
(850) 488-9071
(800) 346-4127 (TTY)
http://www.disabilityrightsflorida.org/

Special Education
Bureau of Exceptional Education and Student Services
Florida Department of Education
325 W. Gaines Street, Suite 614
Tallahassee, FL, 32399-0400
(850) 245-0475
http://www.fldoe.org/ese

Special Format Library
Florida Bureau of Braille and Talking Book Library Services
421 Platt Street
Daytona Beach, FL, 32114-2804
(800) 226-6075
(386)239-6000
(800) 955-8771 (TTY)
http://dbs.myflorida.com/library

Special Health Care Needs
Children’s Medical Services, Department of Health
4052 Bald Cypress Way, Bin A-06
Tallahassee , FL, 32399-1707
(800) 654-4440
(850) 245-4218
ph************@**********fl.us
http://www.myflorida.com

Speech, Language, and Hearing
Florida Association of Speech-Language Pathologists and Audiologists (FLASHA)
222 S. Westmonte Drive #101
Altamonte Springs, FL, 32714
(800) 243-3574
(407) 774-7880
fl****@****ha.org
www.flasha.org

Transition Services
Project 10: Transition Education Network
University of South Florida St. Petersburg
140 7th Avenue South, SVB 108 (mailing address)
529 First Street South (physical address)
St. Petersburg, FL, 33701
(727) 873-4661
(727) 873-4660 (Fax)
pr*******@********sf.edu
http://project10.info
School To Work Transition Services
Division of Vocational Rehabilitation
Department of Education
2002 Old Saint Augustine Road, Building A
Tallahassee, FL, 32301
(850) 245-3360
Ki*******@******oe.org
http://www.rehabworks.org

UCEDD
Mailman Center for Child Development
University of Miami Miller School of Medicine
1601 NW 12th Avenue
Miami, FL 33136
(305) 243-6631
http://mailmancenter.org
Florida Center for Inclusive Communities
University of South Florida
Department of Child and Family Studies
College of Behavioral and Community Sciences
13301 Bruce B. Downs Blvd., MHC 2113A
Tampa, FL, 33612-3807
(813) 974-4612
(866) 818-4797
fl***@******sf.edu
http://www.flfcic.org

Vocational Rehabilitation
Division of Vocational Rehabilitation
Department of Education
4070 Esplanade Way
Tallahassee, FL 32399
(800) 451-4327
(850) 245-3399
http://www.rehabworks.org

Other Organizations
Easter Seals Florida
520 N. Semoran Blvd, Ste 280
Orlando, FL 32807
(407) 306-9766
in**@************ls.com
http://www.fl.easterseals.com
Florida Association of Rehabilitation Facilities, Inc.
2475 Apalachee Parkway, Suite 205
Tallahassee, FL, 32301-4946
(850) 877-4816
in**@********rf.org
http://www.floridaarf.org
VSA Florida
University of South Florida
College of ED/Sp. ED/VSA Florida
4202 E. Fowler Ave, EDU105
Tampa, FL, 33620
http://vsafl.org/

Georgia

Amy Myers

My name is Amy Myers.  Our daughter, Mariah, was born in 1994 with a heart defect called Tetralogy of Fallot.  She was 7 when she was diagnosed with SMS. Having that diagnosis allowed us to finally put the puzzle pieces together.  We have been part of PRISMS since her diagnosis, participating in research studies, attending conferences, and finding tremendous support within the community.

I look forward to serving as a regional representative for PRISMS.  I hope to be a source of education and support for you as travel this SMS journey.

Email: ge*****@*******ms.org

Georgia Resources

ADA Center
Southeast ADA Center
1419 Mayson Street NE
Atlanta, GA, 30324
(800) 949-4232 (V/TTY)
(404) 541-9001 (V/TTY)
AD**********@*****yr.edu
www.adasoutheast.org

Assistive Technology
Tools for Life, Georgia Assistive Technology Act Program
512 Means St Suite 250
Atlanta, GA 30318
(404) 894-0541
in**@***fl.org
www.gatfl.org

CHIP
(health care for low-income uninsured children)
PeachCare for Kids
P.O. Box 2583
Atlanta, GA, 30301-2583
(877) 427-3224
pe*******@****ga.gov
www.peachcare.org

D D Council
Georgia Council on Developmental Disabilities
2 Peachtree St, N.W., 26th floor
Atlanta, GA 30303
(888) 275-4233
(404) 657-2126
(404) 657-2133 (TDD)
www.gcdd.org

Developmental Disabilities
Office of Developmental Disabilities
Division of Mental Health/Developmental Disabilities and Addictive Diseases
Department of Human Resources
2 Peachtree Street, N.W., 24th floor
Atlanta , GA, 30303-3142
404-657-2252
dph.georgia.gov

Early Intervention
Babies Can’t Wait Program
Department of Human Resources
2 Peachtree Street, 11.217
Atlanta, GA, 30303-3186
(888) 651-8224
(404) 657-2726
www.dph.georgia.gov/Babies-Cant-Wait
Bright from the Start
Georgia Department of Early Care and Learning
2 Martin Luther King, Jr. Drive SE,
754 East Tower
Atlanta, GA 30334
(404) 656-5957
decal.ga.gov/

Epilepsy
Epilepsy Foundation of Georgia
6065 Roswell Road, NE, Suite 715
Atlanta, GA, 30328
(800) 527-7105 (In GA)
(404) 527-7155
ep******@********ga.org
www.epilepsyga.org

Independent Living
Statewide Independent Living Council of Georgia, Inc.
315 West Ponce de Leon Ave, Suite 600
Decatur, GA 30030
(888) 288-9780
(770) 270-6860
(770) 270-5671
http://www.silcga.org
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0334 (V);
(202) 207-0340 (TTY)
nc**@**il.org
http://www.ncil.org

Learning Disabilities
Learning Disabilities Association of Georgia
2566 Shallowford Road, Suite 104, PMB 353
Atlanta , GA, 30345
(404) 303-7774
ld***@*******th.net
http://www.ldag.org

Mediation
Division for Exceptional Students
Georgia Department of Education
205 Jesse Hill Jr. Drive SE
Atlanta, GA 30334
(404) 657-9965
as****@***oe.org
http://www.gadoe.org****

Mental Health
National Mental Health America of Georgia
100 Edgewood Ave., Suite 502
Atlanta, GA, 30303
(404) 527-7175
http://www.mhageorgia.org/
NAMI-Georgia, National Alliance on Mental Illness
3180 Presidential Drive, Suite A
Atlanta , GA, 30340
(800) 726-1052
(770) 234-0855
na*********@****ga.org
http://www.namiga.org
Georgia Federation of Families for Children’s Mental Health
1381 Metropolitan Parkway
Atlanta, GA, 30310
(800) 832-8645
(404) 758-4500
http://www.gpsn.org
Division of Mental Health/Developmental Disabilities and Addictive Diseases
Department of Human Resources
2 Peachtree Street, N.W., 22.224
Atlanta , GA, 30303-3142
(404) 657-2260
gb*******@**********ga.us
http://www.mhddad.dhr.georgia.gov

Mental Health – Youth
Department of Human Resources
Division of Mental Health, Developmental Disabilities and Addictive Diseases
2 Peachtree Street, N.W., 23.420
Atlanta , GA, 30303-3171
(404) 657-5681
dm*****@**********ga.us
http://mhddad.dhr.georgia.gov/portal/site/DHR-MHDDAD/

Parent Organizations
Parent Teacher Association (PTA)
Georgia Congress of Parents and Teachers, Inc.
114 Baker Street, N.E.
Atlanta , GA, 30308-3366
(404) 659-0214
http://www.georgiapta.org
Parent Training and Information Center (PTI)
Parent to Parent of Georgia, Inc.
3070 Presidential Parkway, Suite 130
Atlanta, GA, 30340
(800) 229-2038
in**@***ga.org
http://www.p2pga.org

Protection & Advocacy
Georgia Advocacy Office
One Decatur Town Center
150 E. Ponce de Leon Avenue, Suite 430
Decatur, GA, 30030
(800) 537-2329
(404) 885-1234 (V/TTY)
in**@****ao.org
http://www.thegao.org
The ARC of Georgia
PO Box 91051
Atlanta, GA 30364
(470) 222-6088
sr******@****rc.org
https://ga.thearc.org/

Relay Services
(800) 255-0135 (V)
(800) 255-0056 (TTY);, 711 (TTY)
(800) 229-5746 (Speech to Speech-English)
(866) 260-9470 (Speech to Speech-Spanish)

Special Education
Division for Exceptional Students
Georgia Department of Education
205 Jesse Hill Jr. Drive SE
Atlanta, GA 30334
(404) 657-9965
as****@***oe.org
http://www.gadoe.org

Special Format Library
Georgia Library for Accessible Services
1800 Century Place Suite 150
Atlanta, GA 30345
(800) 248-6701
gl***@**************es.org
http://www.georgialibraries.org/glass

Special Health Care Needs
Office of Children with Special Needs
Department of Human Resources
Division of Public Health
Maternal and Child Health Section
2 Peachtree Street, N.W., 11-227
Atlanta , GA, 30303
(404) 657-2850
http://www.dph.georgia.gov/children-and-youth-special-healthcare-needs-cyshn
Friends of Disabled Adults & Children4900 Lewis Road
Stone Mountain, GA 30083
(770) 491-9014
1-866-977-1204
http://www.fodac.org/

Speech, Language, and Hearing
Georgia Speech-Language-Hearing Association
925B Peachtree St NE, Suite 620
Atlanta, GA 30309
(404) 496-5559
http://www.gsha.org

Vocational Education, Disabilities
Vocational Rehabilitation Program
Check website for local offices
(404) 232-1998
https://gvs.georgia.gov/

Other
Easter Seals North Georgia
53 Perimeter Center East Suite 550
Atlanta, GA 30346
(404) 9431070-2006
www.easterseals.com/northgeorgia
Easter Seals Southern Georgia
1906 Palmyra Road
Albany, GA, 31701
(229) 439-7061
http://www.easterseals.com/southerngeorgia/
Easter Seals Eastern Georgia
1500 Wrightsboro Road, Augusta, GA 30904
(706) 667-9695
www.easterseals.com/eastgeorgia/
Fragile Kids Foundation
3825 Presidential Pkwy., Suite 103
Atlanta, GA, 30340
(770) 234-9111
in*****@******ga.org
https://focus-ga.org/
ARTS InCommunity
1200 Old Ellis Rd
Roswell, GA 30076
(470) 357-6748 Ex: 1069
in**@*************ty.org
www.artsincommunity.org

Hawaii

Kara Bale

Aloha!
My name is Kara and I am honored to serve as the PRISMS Regional Representative for Hawaii. PRISMS is a fantastic organization for providing support as well as education and awareness about Smith-Magenis Syndrome.
My husband and I are the proud parents of two sons. Riley was born in 2011 and is our child with Smith-Magenis Syndrome. Liam joined the fun four years later. As the first known case of SMS on the island of Oahu, our journey has been full of learning experiences. We have gained so much knowledge on the path through early intervention, the education system, medical care and therapeutic support options. As an educator myself, I now have experience on both sides of the IEP table. It would be my pleasure to share what we have learned and to offer support for navigating this journey. I look forward to connecting with you.

Email: ha****@*******ms.org

Hawaii Resources

ADA Center
Pacific ADA Center
555 12th Street, Suite 1030
Oakland, CA, 94607
(800) 949-4232 (V/TTY)
(510) 285-5600 (V/TTY);
ad*****@********ic.org
http://www.adapacific.org

Assistive Technology
Assistive Technology Resource Centers of Hawaii
414 Kuwili Street, Suite 104
Honolulu, HI, 96817-5050
(800) 645-3007
(808) 532-7110 (V/TTY)
jo**@**rc.org
http://www.atrc.org

Autism
Autism Society of Hawaii
PO Box 61924
Honolulu, HI, 96839
(808) 342-0364
au******@***il.com
https://autismsocietyofhawaii.org

Career & Technical Education
Career and Technical Education
University of Hawaii
Lower Campus Road, Lunalilo Portable 1
Honolulu, HI, 96822
(808) 956-7461
http://www.hawaii.edu/cte

CHIP
(health care for low-income uninsured children)
Med-QUEST Division
P.O. Box 3490
Honolulu, HI, 96811-3490
(808) 587-3521
http://www.medquest.hawaii.gov/

D D Council
State Council on Developmental Disabilities
919 Ala Moana Boulevard, Suite 113
Honolulu, HI, 96814
(808) 586-8100
wa*************@********ii.gov
http://www.health.hawaii.gov/

Developmental Disabilities
Developmental Disabilities Division
Hawaii State Department of Health
1250 Punchbowl St., Room 463
Honolulu, HI, 96813
(808) 586-5840
http://health.hawaii.gov/ddd/

Early Intervention
Department of Health
1350 S. King Street, Suite 200
Honolulu, HI, 96814
(808) 594-0006
su*******@********ii.gov
http://www.health.hawaii.gov/
Special Education
Office of Curriculum Instruction and Student Support
Special Education Services Branch
Student Support & Special Education Sections
637 18th Avenue, Building C
Honolulu, HI, 96816
(808) 733-4838
http://www.hawaiipublicschools.org/

Epilepsy
Epilepsy Foundation of Hawaii
200 N. Vineyard Boulevard, Suite B259
Honolulu, HI, 96817
(808) 528-3058
ef*@************ii.org
http://www.epilepsyhawaii.org

Independent Living
To find out the contact information for the Statewide
Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
(713) 520-0232 (V)
(713) 520-5136 (TTY)
il**@**ru.org
http://www.ilru.org
To find out the contact information for centers for
independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0334 (V)
(202) 207-0340 (TTY)
nc**@**il.org
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc in Hawaii
3989 Diamond Head Road
Honolulu, HI, 96816
(808) 737-7995
in**@************ii.org
http://www.thearcinhawaii.org

Learning Disabilities
Learning Disabilities Association of Hawaii
200 N. Vineyard Boulevard, Suite 310
Honolulu, HI, 96817
(800) 533-9684 (in HI)
(808) 536-9684 (V/TTY);
LD**@*******ii.org
http://www.ldahawaii.org

Mediation
Hawaii Department of Education
Special Education Section
1390 Miller St.
Honolulu, HI, 96813
(808) 586-3230
http://www.hawaiipublicschools.org

Mental Health
Behavioral Health Administration
Department of Health
1250 Punchbowl Street
Honolulu, HI, 96813
(808) 586-4416
we*****@********ii.gov
http://health.hawaii.gov/
Adult Mental Health Division
1250 Punchbowl Street, Room 256
Honolulu, HI, 96813
(808) 586-4770
http://www.amhd.org
Mental Health America of Hawaii
1136 Union Mall, Suite 510
Honolulu, HI, 96813
(808) 521-1846
http://www.mentalhealth-hi.org
NAMI Hawaii, National Alliance on Mental Illness
770 Kapiolani Boulevard, Suite 613
Honolulu, HI, 96813
(808) 591-1297
in**@********ii.org
http://www.namihawaii.org/
Hawaii Families as Allies, Federation of Families for Children’s Mental Health
99-209 Moanalua Road, Suite 305
PO Box 1971
Aiea, HI, 96701
(808) 682-1511
hf**@**aa.net
http://hifamilies.org

Mental Health – Youth
Child and Adolescent Mental Health Division
Department of Health
3627 Kilauea Avenue, Suite 101
Honolulu, HI, 96816
(808) 733-9339
http://health.hawaii.gov

Parent Organization
Special Parent Information Network (SPIN)
1010 Richards Street, Room 118
Honolulu, Hawaii, 96813
(808) 586-8126 (V/TTY)
sp**@********ii.gov
http://www.spinhawaii.org
Parent Teacher Association (PTA)
Hawaii State Parent Teacher Student Association
PO Box 96782
Honolulu, HI, 96782
(808) 943-2042
hi*********@***il.com
http://www.hawaiistateptsa.org
Parent Training and Information Center (PTI)
Hawaii Parent Training and Information Center
Learning Disabilities Association of Hawaii
245 N. Kukui St., Ste 205
Honolulu, HI, 96817
(800) 533-9684 (in HI)
(808) 536-9684 (V/TTY)
nm****@*******ii.org
http://www.ldahawaii.org

Protection & Advocacy
Hawaii Disability Rights Center
1132 Bishop Street, Suite 2102
Honolulu, HI, 96813
(808) 949-2922 (V/TTY)
in**@********************ts.org
http://www.HawaiiDisabilityRights.org

Relay Services
(808) 643-8255 (V)
(808) 643-8833 (TTY); 711 (TTY)
(800) 229-5746 (Speech to Speech)

Special Education
Student Support Services Branch
Hawaii Department of Education
637 18th Avenue, Room C-101B
Honolulu, HI, 96816
(808) 733-4400
pa******@**********hi.us
http://www.hawaiipublicschools.org

Special Format Library
Hawaii State Library for the Blind and Physically Handicapped
402 Kapahulu Avenue
Honolulu, HI, 96815
(808) 733-8444
(808) 733-8446
(808) 733-8444 (TTY)
http://www.librarieshawaii.org/

Special Health Care Needs
Children with Special Health Needs Program
Department of Health
741 Sunset Avenue
Honolulu, HI, 96816
(808) 733-9055 (V/TTY)
http://health.hawaii.gov/

Speech, Language, and Hearing
Hawaii Speech-Language-Hearing Association
P.O. Box 235888
Honolulu, HI, 96823
(808) 528-4742
hs*************@***oo.com
http://www.hsha.org

Transition Services
Special Education Section, Student Support Services Branch
Hawaii Department of Education
637 18th Avenue, Room C-102
Honolulu, HI, 96816
(808) 733-4832
ma*************@**********hi.us
http://www.autismspeaks.org

UCEDD
Pacific Basin Program
University of Hawaii, Center on Disability Studies
1776 University Avenue, UA 4-6
Honolulu, HI, 96822
(808) 956-2303
ro******@****ii.edu
http://www.hawaii.edu/cds

Vocational Rehabilitation
Division of Vocational Rehabilitation
Department of Human Services
600 Kapi’olani Blvd. #305
Honolulu , HI, 96813
(808) 586-9745
sm*******@********ii.gov
http://humanservices.hawaii.gov/vr

Other
Easter Seals Hawaii
710 Green Street
Honolulu, HI, 96813
(888) 241-7450
(808) 536-1015 (V/TTY)
http://www.eastersealshawaii.org
Disability and Communication Access Board
919 Ala Moana Boulevard, Room 101
Honolulu, HI, 96814-4920
(808) 586-8121 (V/TTY)
dc**@********ii.gov
http://www.hawaii.gov/health/dcab

Idaho

Maria Feagin

Hello, my name is Maria Feagin and this my son Hunter. We were very lucky to have received Hunter’s SMS diagnosis when he was 9 weeks old. Finding out that your child has a genetic disorder that will impact every aspect of his life, is very heartbreaking to begin with. So many uncertainties, unknowns, fears and mainly grief. Connecting with Prisms really gave us a perspective and the warm welcome and support by this community and connecting with other parents allowed us to learn and embrace this new path. Hunter is so full of love and loves hugging everyone in his path, he is so loved by everyone he meets. We are so lucky to be part of this journey. We can wait to provide the same love and support to other families. – Maria & Hunter

Email: id***@*******ms.org

Idaho Resources

ADA Center
Northwest ADA Center
Center for Continuing Education in Rehabilitation
University of Washington
6912 220th St SW, #105
Mountlake Terrace, WA, 98043
(425) 248-2480 (V/TTY)
(800) 949-4232 (V/TTY)
db*****@**********on.edu
http://www.nwadacenter.org

Assistive Technology
Idaho Center for Assistive Technology
Center on Disability & Human Development
University of Idaho
1187 Alturas Dr
Moscow, ID 83843
id*****@****ho.edu
http://idahoat.org

Autism
Autism Society of America, Treasure Valley Chapter
PO Box 44831
Boise, ID, 83711
(208) 336-5676
au***********@***oo.com
http://www.asatvc.org

CHIP
(health care for low-income uninsured children)
2-1-1 Idaho CareLine
Idaho Department of Health and Welfare
P.O. Box 83720
Boise, ID, 83720-0026
(800) 926-2588; or dial 2-1-1
ca******@*******ho.gov
http://www.idahocareline.org

D D Council
Idaho Council on Developmental Disabilities
700 W. State St.
Boise, ID, 83702
(208) 334-2178
in**@********ho.gov
http://www.icdd.idaho.gov

Developmental Disabilities
Division of Family and Community Services
Department of Health and Welfare
P.O. Box 83720
Boise, ID, 83720-0036
(208) 334-5536
ca*******@*******ho.gov
http://www.healthandwelfare.idaho.gov

Epilepsy
Epilepsy Foundation of Idaho
310 W. Idaho
Boise, ID, 83702
(208) 344-4340
(800) 237-6676 (In ID)
ef**@***********ho.org
http://www.epilepsyidaho.org

Early Intervention
Children’s Developmental Services
Family and Community Services
Department of Health and Welfare
P.O. Box 83720
450 W. State Street, 5th Floor
Boise, ID, 83720-0036
(208) 334-5514
(800) 926-2588
jo****@*******ho.gov
http://www.infanttoddler.idaho.gov
Bureau of Special Population Services
Idaho Department of Education
650 West State Street
Boise, ID, 83720-0027
(208) 332-6800
rh********@*******ho.gov
http://www.sde.idaho.gov/site/special_edu/

Independent Living
To find out the contact information for the Statewide
Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
(713) 520-0232 (V)
(713) 520-5136 (TTY)
il**@**ru.org
http://www.ilru.org
To find out the contact information for centers for
independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0334 (V)
(202) 207-0340 (TTY
nc**@**il.org
http://www.ncil.org

Learning Disabilities
Idaho Department of Health and Welfare
Ross Edmunds, Administrator, 208-334-6997
www.healthandwelfare.idaho.gov

Mediation
Idaho Commission on Human Rights
317 W Main St., Second Floor
Boise, ID, 83735-0660
(208) 334-2873/(888) 249-7025
https://humanrights.idaho.gov/mediation.html

Mental Health
Adult and Children’s Mental Health Programs
Division of Family and Community Services
Department of Health and Welfare
P.O. Box 83720-5th Floor
Boise, ID, 83720-0036
(208) 334-0969
http://www2.state.id.us/dhw/mentalhealth/
NAMI-Idaho, National Alliance on Mental Illness
id*******@***il.com http://www.nami.org/sites/NAMIIDAHO
ma*****@*******se.org http://www.namiboise.org/
Jannus (formerly Mountain States Group)
Main Office
1607 W. Jefferson
Boise, ID, 83702
(208) 336-5533
kt*****@****us.org
www.jannus.org

Mental Health – Youth
Children’s Mental Health
Division of Behavioral Health
Department of Health and Welfare
P.O. Box 83720-3rd Floor
Boise, ID, 83720-0036
(208) 334-6559
ha******@*******ho.gov
http://www.healthandwelfare.idaho.gov

Parent Organizations
Parent Teacher Association (PTA)
Idaho PTA
1655 W Fairview #109
Boise, ID, 83702
(208) 344-0851
id******@******ta.org
http://www.idahopta.net
Parent Training and Information Center (PTI)
Idaho Parents Unlimited, Inc. (IPUL)
500 S 8th St.
Boise, ID, 83702
(208) 342-5884 (V/TTY)
(800) 242-4785 (in ID only)
pa*****@*******ho.org
http://ipulidaho.org

Protection & Advocacy
DisAbility Rights Idaho
4477 Emerald Street, Suite B-100
Boise, ID, 83706-2066
(208) 336-5353 (V/TTY)
(866) 262-3462
in**@*******************ho.org
http://www.disabilityrightsidaho.org

Relay Services
(800) 377-1363 (V)
(800) 377-3529 (TTY/ASCII); 711 (TTY)
(888) 791-3004 (Speech to Speech)
(866) 252-0684 (Spanish)

Speech, Language, and Hearing
Idaho Speech, Language, Hearing Association (ISHA)
P.O. Box 603
Mountain Home, ID, 83647
(208) 599-2536
http://www.idahosha.org

Special Education
Idaho Department of Education
650 W State St.
Boise, ID, 83702
(208) 332-6800
in**@*******ho.gov
http://www.sde.idaho.gov/site/special_edu/

Special Format Library
(for individuals with visual and/or physical disabilities)
Idaho Commission for Libraries
325 W. State Street
Boise, ID, 83702
(208) 334-2150
su********@*************ho.gov
http://libraries.idaho.gov/tbs

Special Health Care Needs
Children’s Special Health Program
Bureau of Clinical and Preventive Services
Idaho Department of Health and Welfare
P.O. Box 83720
Boise, ID, 83720-0036
(208) 334-5962
sc******@*******ho.gov
http://www.cshp.dhw.idaho.gov
State Division of Professional Technical Education
P.O. Box 83720
Boise, ID, 83720-0095
(208) 334-3216
as*******@*******ho.gov
http://www.pte.idaho.gov

Transition Services
Idaho Council on Developmental Disabilities
700 W. State St., Suite 119
Boise, ID, 83702-5868
(208) 334-2178/(800) 544-2433
in**@********ho.gove
http://www.sde.idaho.gov/site/special_edu/

UCEDD
Idaho Center on Disabilities and Human Development
University of Idaho
College of Education
121 W Sweet Avenue
Moscow, ID, 83843
(208) 885-6000
(800) 393-7290
(800) 432-8324 (TTY)
id*******@****ho.edu
http://www.idahocdhd.org
Vocational Rehabilitation
Division of Vocational Rehabilitation
P.O. Box 83720
Boise, ID, 83720-0096
(208) 334-3390 (V/TTY)
http://www.vr.idaho.gov

Other
Summit Assistance Dogs
7575 Chestnut Lane
Anacortes, WA, 98221
(360) 293-5609
in**@********gs.org
http://www.summitdogs.org/
VSA arts of Idaho (through Idaho Parents Unlimited)
4619 Emerald, Suite E
Boise, ID, 83706
(208) 342-5884
http://ipulidaho.org/
Washington State Fathers Network
16120 N.E. 8th Street
Bellevue, WA, 98008
(425) 747-4004, ext. 4286
(800) 833-6388
gr*********@*******ng.org
http://www.fathersnetwork.org

Illinois

Denien Rasmussen

My name is Denien Rasmussen, and I am a Regional Representative for PRISMS as well as a SMS mom and PRISMS Board Member.

I live with my husband Jim and my twin 14-year-old boys. My SMS individual is Matthew, and his brother is Michael. We live in Palatine, Illinois, which is about 30 miles northwest of Chicago. I work full-time as the Chief Compliance Officer and Operating Officer of RW Smith & Associates, LLC. I have been with RW Smith for over 33 years.

My son Matthew was diagnosed when he was 4 ½, and it was the most overwhelming and devastating news we have ever encountered. I had nowhere to turn. Luckily for me, my pediatrician sent me to the PRISMS website. I have been a member ever since and feel blessed to be part of a great organization with amazing parents.

The purpose of the regional rep program is to help educate families with children who have SMS about… well, about everything they need to know about SMS. Please send me an email or give me a call at 847 571-7739, and I will do my best to help you.

Email: il******@*******ms.org

Kevin O’Connor

My name is Kevin O’Connor. I am a Regional Representative for IL. My son Deane, with SMS, was diagnosed at 17 months. He is now 27.

I have been affiliated with PRISMS from almost the beginning. Deane and I attended the first PRISMS conference in Bethesda, MD in 1994, and we have attended every PRISMS conference since and presented often.

PRISMS has served as an important source of information on development, coping, and research for Deane, my family and myself. It’s very helpful to understand what similar challenges and successes other parents are experiencing so that we can build on successes and avoid, if possible, pot holes. Parent sharing of experience is key.

I would like to share Deane’s successes and challenges both current and historic. I believe that small group or 1-on-1 meetings between parents and between SMS individuals helps to build strong relationships and facilitates information sharing. I especially would like to help accelerate access to useful knowledge for parents of newly diagnosed SMS children.

Email: il******@*******ms.org

Illinois SMS Clinic

Chicago

Smith-Magenis Clinic

Rush University Medical Center
Ages seen: Children and Adults
Medical Director: Elizabeth Berry-Kravis, MD, PhD
Clinic Coordinator: Angel Wang
Email: an********@**sh.edu
Phone: 312-942-4036
Web: https://www.rush.edu/

Illinois Resources

FIRST THING TO DO: SIGN UP FOR PUNS

PUNS – Prioritization of Urgency of Need for Services
To receive any IL state benefits you must be on the list.
https://www.dhs.state.il.us/page.aspx?item=47620
https://www.svcincofil.org/puns/

“The Book”
How to Navigate the
Illinois Disability System
https://www.farley1.com/The_Book_Robert_H_Farley_Esq.pdf

Developmental Disability Service Agencies List
https://www.dhs.state.il.us/page.aspx?module=12&officetype=&county=

ADA Center
Great Lakes ADA Center
University of Illinois at Chicago
Institute on Disability & Human Development (MC 728)
1640 West Roosevelt Road, Room 405
Chicago, IL, 60608
(800) 949-4232 (V/TTY)
(312) 413-1407 (V/TTY)
ad***@***********es.org
http://www.adagreatlakes.org

Assistive Technology
Illinois Assistive Technology Program
1 W. Old State Capitol Plaza, Suite 100
Springfield, IL, 62701
(800) 852-5110 (V/TTY, in IL only)
(217) 522-7985 (V/TTY)
wg******@****ch.org
http://www.iltech.org

Autism
Illinois Center for Autism
548 South Ruby Lane
Fairview Heights, IL, 62208
(618) 398-7500
in**@*********************sm.org
https://illinoiscenterforautism.org

CHIP
(health care for low-income uninsured children)
Illinois All Kids
(800) 843-6154
https://www.insurekidsnow.gov

D D Council
Illinois Council on Developmental Disabilities
830 S. Spring Street
Springfield, IL 62704
https://icdd.illinois.gov/

Developmental Disabilities
IL Division of Developmental Disabilities
Department of Human Services
319 E. Madison, Suite 4N
Springfield, IL, 62701
(888)337-5267
https://www.dhs.state.il.us/page.aspx?item=29761

Early Intervention
Bureau of Early Intervention
Department of Human Services
222 S. College, 2nd Floor
Springfield, IL, 62704
(800) 323-4769 (in IL only)
(217) 782-1981
ja*********@******is.gov
http://www.dhs.state.il.us/ei

Epilepsy
Epilepsy Foundation Greater Southern Illinois
3515 N Belt W
Belleville, IL, 62226-5944
(866) 848-0472
(618) 236-2181
https://www.epilepsy.com/greater-southern-illinois

Epilepsy Foundation of Greater Chicago
17 N. State, Suite 650
Chicago, IL, 60602
(800) 273-6027
(312) 939-8622
(312) 628-4770(TTY)
in**@*************go.org
http://www.epilepsychicago.org

Independent Living
Intellectual & Developmental Disabilities
The Arc of Illinois
18207-A Dixie Highway
Homewood, IL , 60430
(708) 206-1930
to**@********il.org
http://www.thearcofil.org

Learning Disabilities
Learning Disabilities Association of Illinois
10101 S. Roberts Road, Suite 205
Palos Hills, IL, 60465
(708) 430-7532
LD*****@*******ch.net
http://ldaillinois.org/

Mediation
Illinois State Board of Education
Division of Special Education Services
Springfield Office
(217) 782-5589
Chicago Office
(312) 814-5560
https://www.isbe.net

Mental Health
Division of Mental Health
Department of Human Services
110 S Grand Ave E
Springfield, IL 62762
(800)-843-6154
401 S Clinton St
Chicago, IL 60607
(800)-843-6154
http://www.dhs.state.il.us/page.aspx?item=33007

Mental Health America of Illinois
70 East Lake Street, Suite 900
Chicago , IL, 60601
(312) 368-9070
cw**@**ai.org
http://www.mhai.org

NAMI Illinois, National Alliance on Mental Illness
218 W. Lawrence
Springfield, IL, 62704
(800) 346-4572
(217) 522-1403
na****@*******al.net
https://namiillinois.org/

Mental Health – Youth
Division of Mental Health
Department of Human Services
Springfield
(800) 843-6154
Chicago
(800) 843-6154
http://www.dhs.state.il.us/page.aspx?item=29735

Parent Organizations
Family Support Network of Illinois
5739 W. Martindale Lane
Peoria, IL, 61615-9669
(309) 693-8981
fs*@******************rk.org
http://www.familysupportnetwork.org/

Parent Teacher Association (PTA)
Illinois Congress of Parents and Teachers
901 S. Spring Street
Springfield, IL, 62704-2790
(800) 877-9617
(217) 528-9617
il*******@*ta.org
http://www.illinoispta.org

Parent Training and Information Center (PTI)
Family Resource Center on Disabilities
11 E. Adams, Ste 1002
Chicago, IL, 60604
(312) 939-3513 (V)
(312) 939-3519 (TDD)
in**@**cd.org
http://www.frcd.org

Parent Training and Information Center (PTI)
Family Matters
Parent Training and Information Center
1901 S. 4th Street, Suite 209
Effingham, IL, 62401
(866) 436-7842
(217) 347-5428 (V/TTY)
de******@****ic.org; in**@****ic.org
http://www.fmptic.org

Parent-To-Parent
Family Resource Center on Disabilities
11 E. Adams, Ste 1002
Chicago, IL, 60604
(312) 939-3513
in**@**cd.org
http://www.frcd.org

PERC
Parent Education Resource Center
520 Plum Grove Rd
Palatine, IL 60067
https://nsseo.org/community/parent-education-resource-center-perc/

Preschool, Disabilities
Division of Early Childhood Education
100 N. First Street, C-428
Springfield, IL, 62777-0001
(217) 524-4835
hh******@**be.net
http://www.isbe.net

Protection & Advocacy
Equip for Equality, Inc.
20 N. Michigan, Suite 300
Chicago, IL 60602
(800) 537-2632 (V)
(312) 341-0022 (V)
(800) 610-2779 (TTY)
co*******@**************ty.org
http://www.equipforequality.org
For a listing of resource centers that provide legal or advocacy services at no or low cost, visit: http://www.iser.com/CAadvocacy.html

Relay Services
(800) 526-0857 (V)
(800) 526-0844 (TTY); 711 (TTY)
(877) 526-6690 (Speech to Speech)
Special Education
Illinois State Board of Education
Kate Anderson Foley, Ph.D.
Assistant Superintendent/State Director of Special Education
(217)-782-4870- Springfield
(312)-814-5560- Chicago
https://www.isbe.net/Pages/Special-Education-Programs.aspx

Special Format Library
Illinois State Library
Talking Book and Braille Service
401 E. Washington
Springfield, IL, 62701
(800) 665-5576 ext. 5 (in IL)
(217) 782-9435
(888) 261-5280 (TTY)
sr***@***os.net
http://www.ilbph.org

Special Health Care Needs
Division of Specialized Care for Children
University of Illinois at Chicago
3135 Old Jacksonville Road
Springfield, IL, 62704-6488
(800) 322-3722
http://www.uic.edu/hsc/dscc/

Speech, Language, and Hearing
Illinois Speech-Language-Hearing Association
35 East Wacker Dr., Suite 850
Chicago, IL 60601-2106
(312) 644-0828
ck******@*****om.com
http://www.ishail.org

Technical Support to Schools
Midwest PBiS Network
2900 Ogden Ave
Lisle, IL 60532
(630) 620-9032
su*****@*********is.org
http://www.midwestpbis.org/

On Positive Behavior Interventions and Supports
Illinois Statewide Technical Assistance Center
PBIS Network
Chicago: (312) 814-2220
Springfield: (217) 782-4321
https://www.isbe.net/Pages/Positive-Behavioral-Intervention.aspx

Transition Services
Illinois State Board of Education
Springfield
(217) 782-4321/(866) 262-6663
(312) 814-2220
https://www.isbe.net/Pages/SPP-APR-Indicator-13.aspx

UCEDD
Institute on Disability and Human Development (M/C 626)
Department of Disability and Human Development
University of Illinois at Chicago
1640 W. Roosevelt Road
Chicago, IL, 60608
(312) 413-1647
http://ahs.uic.edu/disability-human-development/
http://www.isbe.net

DRS-Jobs
Division of Rehabilitation Services
Department of Human Services
Check website for local offices
http://www.dhs.state.il.us/page.aspx?item=29736
Other

Pathways Awareness
150 N. Michigan Avenue, Suite 2100
Chicago, IL, 60601
(800) 955-2445
(800) 326-8154 (TTY)
fr*****@******ys.org
http://www.pathways.org
Wrightslaw– wrightslaw.com
Special Education law and Advocacy – Sign up for the Special Ed Advocate (It is Free and very helpful)
Wrightslaw is leading website about special education law and advocacy with thousands of articles, cases, and free resources about hundreds of special needs information on IEP, 504.etc.
COOPERATIVE SCHOOLS

NSSEO
Northwest Suburban Special Education Organization
799 W. Kennisgton
Mt. Prospect, IL 60056
(847) 463-8100

North Suburban Education Cooperative
TRUENORTH EDUCATIONAL COOPERATIVE 804
760 Red Oak Lane
Highland Park, IL 60035
(847) 831-5100
https://www.truenorth804.org/

Special Education of Lake County IL
18160 Gages Lake Rd
Grayslake, IL 60030
(847)548-8470
http://www.sedol.us/

CASE-DuPage
Cooperative Association for Special Education
22W600 Butterfield Rd
Glen Elly, IL 60137
(630)942-5600
https://www.casedupage.com/

LADSE
La Grange Area Department of Special Education
1125 Harrison Ave
LaGrange Park, IL 60526
(708)352-1163
https://www.ladse.org/

NDSEC
North Du Page Special Education Cooperative
132 Pine Ave,
Roselle, IL 60172
(630)894-0490
https://www.ndsec.org/

NWSE
Northwest Special Education Cooperative – JoDaviess, Stephenson and Carroll counties
310 N. West Street
Elizabeth, IL 61028
(815)599-1947
http://www.northwestcoop.com/index.html

MVSEC
Mid-Valley Special Education
1304 Ronzheimer Ave
St. Charles, IL 60174
(331)228-4873
https://mvse.org/

A.E.R.O. Special Education Cooperative
5400 W. 77th St.
Burbank, IL 60459
(708)496-3330
https://www.aerod806.org/
Special Recreation Associations- Day Camps/programs

NWSRA
Northwest Special Recreation Association
3000 W. Central Rd
Rolling Meadows, IL 60008
(847)392-2848
https://www.nwsra.org/

SWSRA
South West Special Recreation Association
12521 S. Kostner
Alsip, IL 60803
(708)389-9423
https://www.swsra.org/

WDSRA
Western DuPage Special Recreational Association
116 N. Schmale Road
Carol Stream, IL 60188
(630)681-0962
https://www.wdsra.com/

WSSRA
West Suburban Special Recreation Association
2915 Maple St
Franklin Park, IL 60131
(847)455-2100
https://www.wssra.net/

SSSRA
South Suburban Special Recreation Association
19910 80th Ave
Tinley Park, IL
(815)806-0384
https://www.sssra.org/

NIRSA
Northern Illinois Special Recreation Association
285 Memorial Dr
Crystal Lake, IL 60014
(815)459-0737
https://www.nisra.org/

Indiana

Brooke Widmer

My name is Brooke Widmer. My son Judah was diagnosed in 2013 when he was 18 months old. We have been affiliated with PRISMS for 2 years. When we first learned about Judah’s diagnosis, we google searched SMS and were lead to the PRISMS website. We found this website to be the most informational. In the midst of hearing this difficult diagnosis, the website seemed to be positive and encouraging.

The conference was an extremely beneficial experience as we left with a lot of new information. Mostly, it was nice for us to meet families on the same journey. We continue to stay in contact with a few of the families. I am here to listen. I know how devastating getting this diagnosis can be, especially when you have never heard of SMS and others around you have not heard of it either. I am here to support you.

Email: in*****@*******ms.org

Indiana Resources

Assistive Technology
Easter Seals
INDATA Project
Assistive Technology Services
4740 Kingsway Dr
Indianapolis, IN, 46205
(317) 466-2013
(888) 466-1314
te**@*******************ds.org
http://www.eastersealstech.com/about/the-indiana-assistive-technology-indata-project/
AutismAutism Society of Indiana
3951 N. Meridian St, Ste 220
Inianapolis, IN, 46208
(800) 609-8449
in**@******sm.org
http://www.inautism.org
Indiana Resource Center for Autism (IRCA)
Indiana Institute on Disability and Community
Indiana’s University Center for Excellence on Disabilities
Indiana University
1905 North Range Road
Bloomington, IN, 47408-2696
(812) 855-6508
(812) 855-9396 (TTY)
http://www.iidc.indiana.edu/irca

CHIP
(health care for low-income uninsured children)
Hoosier Healthwise
Children’s Health Insurance Program
Indiana Family and Social Services Administration
402 W. Washington Street, Room 382, MS07
Indianapolis, IN, 46204-2739
(800) 889-9949
https://www.insurekidsnow.gov/coverage/in/index.html

D D Council
Governor’s Council for People with Disabilities
402 W. Washington St.
Indianapolis, IN, 46204
(317) 332-7770
GP***@***pd.org
http://www.IN.gov/gpcpd/

Developmental Disabilities
Family and Social Services Administration
402 W Washington St., #W451
PO Box 7083, MS26
Indianapolis, IN, 46207-7083
(800) 545-7763
http://www.in.gov/fssa/ddrs/2639.htm

Early Intervention
Indiana Family and Social Services Administration
Division of Disability and Rehabilitative Services
Bureau of Child Development Services (BCDS)
402 W. Washington Street, Room W-386
Indianapolis, IN, 46204
(800) 545-7763
Fi***********@*****in.gov
http://www.in.gov/fssa/ddrs/4655.htm

Epilepsy
Epilepsy Foundation of Indiana
3901 W. 86th Street, Suite 380
Indianapolis, IN, 46268
(800) 526-6618
(317) 876-0600
in**@***********************on.org
http://indianaepilepsyfoundation.org

Independent Living
To find out the contact information for the Statewide
Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
(713) 520-0232 (V);
(713) 520-5136 (TTY)
il**@**ru.org
http://www.ilru.org
To find out the contact information for centers for
independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0334 (V)
(202) 207-0340 (TTY)
nc**@**il.org
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc of Indiana
107 N. Pennsylvania, Suite 800
Indianapolis, IN, 46204
(317) 977-2375
http://www.arcind.org

Learning Disabilities
Learning Disabilities Association of Indiana
176 W. Logan St., #158
Noblesville, IN 46060
us******@***il.com
https://ldaamerica.org/lda-chapters/indiana/

Mediation
Indiana Department of Education
Center for Exceptional Learners
115 Washington Street – South Tower, Ste 600
Indianapolis, IN, 46204
(317) 232-0570
sp**************@****in.gov
www.doe.in.gov/specialed/special-education-due-process

Mental Health
Division of Mental Health and Addiction
Family and Social Services Administration
402 W. Washington Street, Room W353
Indianapolis, IN, 46204-2739
(317) 232-7845
http://www.IN.gov/fssa
Mental Health America in Indiana
1431 N. Delaware Street
Indianapolis, IN, 46202
(800) 555-6424 (in IN only)
(317) 638-3501
http://www.mhai.net
NAMI Indiana, National Alliance on Mental Illness
P.O. Box 22697
Indianapolis, IN, 46222-0697
(800) 677-6442
(317) 925-9399
in**@*********na.org
http://www.namiindiana.org

Mental Health – Youth
Children’s Services Bureau
Division of Mental Health and Addiction
Family and Social Services Administration
402 W. Washington Street, Room W353
Indianapolis, IN, 46204-2772
(317) 232-7934
ke*********@*****in.gov
http://www.IN.gov/fssa

Parent Organizations
Parent Teacher Association (PTA)
Indiana Congress of Parents and Teachers, Inc.
2525 N. Shadeland Avenue, D-4
Indianapolis, IN, 46219-1787
(317) 357-5881
in**@********ta.org
http://www.indianapta.org
Parent Training and Information Center (PTI)
IN*SOURCE
1703 S. Ironwood Drive
South Bend, IN, 46613
(800) 332-4433 (In IN)
(574) 234-7101 (V/TTY);
in******@******ce.org
http://www.insource.org
P2P at About Special Kids, Inc.
7172 Graham Road, Suite 100
Indianapolis, IN, 46250
(317) 257-8683
(800) 964-4746
fa********@**************ds.org
http://www.aboutspecialkids.org
Family Voices Indiana
4060 W 400 S
Lebanon, IN, 46052
(317) 944-8982
in**@*******na.org
http://www.fvindiana.org

Preschool, Disabilities
Indiana Department of Education
South Tower, Suite 600
115 W. Washington St.
Indianapolis, IN, 46204
(317) 232-0570
(877) 851-4106
sp**************@****in.gov
http://www.doe.in.gov/specialed

Protection & Advocacy
Indiana Disability Rights
Indiana Protection and Advocacy Services
4701 N. Keystone Ave., Suite 222
Indianapolis, IN, 46204
(317) 722-5555
(800) 622-4845
in**@*********************ts.org
http://www.in.gov/idr/2523.htm
Partners in Policymaking
Partners in Policymaking
c/o Governor’s Council for People with Disabilities
150 W. Market Street, Suite 628
Indianapolis, IN, 46204
(317) 232-7770
PI*@***pd.org
http://www.in.gov/gpcpd/

Relay Services
(800) 743-3333 (V)
(800) 743-3333 (TTY); 711 (TTY)
(877) 743-8231 (Speech to Speech)

Special Education
Indiana Department of Education
Division of Exceptional Learners
115 W. Washington St – South Tower, Ste 600
Indianapolis, IN, 46204-2798
(317) 232-0570
sp**************@****in.gov
http://www.doe.in.gov/specialed

Special Format Library
Indiana State Library
Talking Books
140 N. Senate Avenue
Indianapolis, IN, 46204
(800) 622-4970
(317) 232-3684
(317) 232-7763 (TTY)
lb**@********in.gov
http://www.in.gov/library/tbbl.htm

Special Health Care Needs
Maternal & Children’s Special Health Care Services Division
Indiana State Department of Health
2 N. Meridian Street, Suite 7B
Indianapolis, IN, 46204
(800) 475-1355
(317) 233-1351
http://www.in.gov/isdh/19571.htm

Speech, Language, and Hearing
Indiana Speech-Language-Hearing Association, ISHA
3125 Dandy Trail, Ste 110,
Indianapolis, IN 46214
(317) 916-4146
http://www.islha.org

Transition Services
Center on Community Living and Careers
Indiana Institute on Disability and Community
University Center for Excellence
Indiana University
2853 E. Tenth Street
Bloomington, IN, 47408
(812) 855-6508
tg*****@*****na.edu
http://www.iidc.indiana.edu/

UCEDD
Indiana Institute on Disability and Community
Indiana University
1905 North Range Road
Bloomington, IN, 47408-2696
(812) 855-6508
(812) 855-9396 (TTY)
ii**@*****na.edu
http://www.iidc.indiana.edu

Vocational Education
Department of Career and Technical Education
10 N. Senate Avenue, Room 212
Indianapolis, IN, 46204-2277
(317) 234-4106
cg*****@****in.gov
www.in.gov/dwd/2415.htm
Bureau of Rehabilitation Services
Indiana Family and Social Services Administration
Division of Disability and Rehabilitative Services
402 W. Washington Street, Room W453
P.O. Box 7083
Indianapolis, IN, 46207-7083
(800) 545-7763
(317) 234-4475
mi************@*****in.gov
http://www.IN.gov/fssa/

Other
Easter Seals Wayne/Union Counties
4740 Kingsway Dr.
Indianapolis, IN 46205
(317) 466-1000
http://eastersealscrossroads.org

Iowa

Natasha Schaller

IA, KS

My name is Natasha Schaller and I live in Winterset, IA, with my husband, Eric Schaller, and our three children, Reese, Charlotte & Levi. Our son, Levi, was born in 2018 and diagnosed with Smith-Magenis Syndrome at 10 months old. Shortly after Levi’s diagnosis we found the PRISMS website and connected with our Regional Representative. We were so comforted in those early days having someone to reach out and talk to, exchange emails with and ask questions. My hope in becoming a Regional Representative is to support newly diagnosed families, and build strong connections with currently diagnosed families.

After attending our first conference in 2022 and seeing the sense of community, the joy of connection and what we can all learn when we come together inspired me to be more involved in my local SMS community. I’m looking forward to serving this area and I hope you’ll reach out with any questions, or even just to chat.

Email: io**@*******ms.org

Iowa Resources

ADA Center
Great Plains ADA Center
100 Corporate Lake Drive
Columbia, MO, 65203
(800) 949-4232
http://www.gpadacenter.org/

Assistive Technology
Iowa Program for Assistive Technology
Center for Disabilities and Development
100 Hawkins Drive
Iowa City, IA, 52242-1011
(319) 356-1434
IP**@***wa.edu
http://www.iowaat.org/

CHIP
(health care for low-income uninsured children)
hawk-i Program
P.O. Box 71336
Des Moines, IA, 50325-9958
(800) 257-8563
https://dhs.iowa.gov/ime/about/stateplan/CHIP

Early Intervention & Preschool, Disabilities
Iowa Department of Education
400 E. 14th Street
Des Moines, IA 50319
(515) 281-5294
https://www.educateiowa.gov/pk-12/early-childhood/early-childhood-special-education

Epilepsy
Epilepsy Foundation North/Central Illinois, Iowa & Nebraska
321 W State St. #208
Rockford, IL 61101-1119
(815) 964-2689
(800) 221-2689
ef****@****il.org
http://www.epilepsy.com/north-central-illinois-iowa-nebraska
To find out the contact information for centers for
INDEPENDENT LIVING (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0340 (TTY)
(202) 207-0334 (V)
nc**@**il.org
http://www.thearcofiowa.org

Learning Disabilities
Learning Disabilities Association of Iowa
5665 Greendale Rd, Suite D
Johnston, IA, 50131
(515) 280-8558
http://ldaiowa.org/

Mental Health
NAMI Iowa
3839 Merle Hay Rd., Suite 229
Des Moines, IA 50310
(800) 950-6264
(515) 254-0417
lo**@****mh.org
http://www.namiiowa.org

Mental Health – Youth
State Mental Health Agency/State DD Program
Mental Health and Disabilities Services
Department of Human Services
Hoover State Office Building, 5th Floor
1305 E. Walnut Street
Des Moines, IA, 50319-0114
(515) 242-6845
mm*****@**********ia.us
http://www.dhs.iowa.gov/mhds/mental-health

Protection & Advocacy
Disability Rights Iowa
400 E. Court Ave, Suite 300
Des Moines, IA, 50309
(800) 779-2502
(515) 278-2502
in**@****wa.org
http://disabilityrightsiowa.org/

Special Health Care Needs
Health Information Center of Iowa
321 E. 6th Street
Des Moines, IA, 50309
(800) 450-8667
(515) 243-1713
(800) 735-2942 (Relay in IA)
f2*****@*********ce.org
http://www.uihealthcare.com/chsc

Special Format Library
Iowa Department for the Blind
Library Services
524 Fourth Street
Des Moines, IA, 50309-2364
(800) 362-2587
(515) 281-1333
co*****@************ia.us
https://blind.iowa.gov/library

State Web Site
Connect with your state’s official website to find all manner of state
agencies and information, including how to contact your governor
and/or your representatives in the Senate and House:
http://www.iowa.gov

Other Organizations
Easter Seals Iowa
401 NE 66th Ave
Des Moines, IA, 50313
(515) 289-1933
in**@***********ia.org
http://www.easterseals.com/ia/

Kansas

Natasha Schaller

IA, KS

Email: ka****@*******ms.org

Kansas Resources

ADA Center
Great Plains ADA Center
100 Corporate Lake Drive
Columbia, MO, 65203
ad*******@******ri.edu
http://www.gpadacenter.org/

Assistive Technology
Assistive Technology for Kansans Project
(campuses in Lawrence, Kansas City, Overland Park, Wichita and Salina)
1450 Jayhawk Blvd.
Lawrence, KS, 66045
http://atk.ku.edu/

Autism
Autism Society of the Heartland
P.O. Box 860984
Shawnee, KS, 66286
http://www.asaheartland.org

CHIP
(Health care for low-income uninsured children)
(785) 368-1515/(800) 792-4884
http://www.kdheks.gov/hcf/Medicaid/about.html

D D Council
Kansas Council on Developmental Disabilities
Docking State Office Building, Room 141
915 S.W. Harrison Street
Topeka, KS, 66612-1570
http://www.kcdd.org

Developmental Disabilities
Department for Children and Families
Docking State Office Building
915 SW Harrison Street, 9th Floor
Topeka, KS, 66612-1570
http://www.dcf.ks.gov/Services/RS/Pages/default.aspx

Early Intervention
Children’s Developmental Services
Kansas Department of Health and Environment
1000 SW Jackson Street, Suite 220
Topeka, KS, 66612-1274
http://www.kdheks.gov/cds/index.html

Epilepsy
Epilepsy Foundation of Kansas and Western Missouri
St. Louis, MO
(314) 781-4949/(800) 264-6970
Kansas City, MO
(816) 444-2800/(844) 415-7152
ep******@**mk.org
https://efmk.org/

Independent Living
ILRU
(713) 520-0232
Check website or email for local resources
il**@**ru.org
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/KS
National Council on Independent Living
(877) 525-3400
Check website or email for local resources
http://www.ncil.org/

Intellectual & Developmental Disabilities
TARC
2701 S.W. Randolph
Topeka, KS, 66611
http://www.tarcinc.org

Learning Disabilities
Learning Disabilities Association of Kansas
2618 SW Arvonia Place
Topeka, KS 66614
http://ldaamerica.org/lda-chapters/kansas/

Mental Health
Mental Health Association of South Central Kansas
555 N. Woodlawn, Suite 3105
Wichita, KS, 67208
http://www.mhasck.org
NAMI Kansas
501 SW Jackson St., Suite 400
Topeka, KS 66601
(800) 539-2660
in**@********as.org
https://namikansas.org/

Mediation
Kansas State Department of Education
Special Education Services
900 SW Jackson St.
Topeka, KS 66612
(785) 296-7454/(800) 203-9462
http://www.ksde.org/Agency/Division-of-Learning-Services/Early-Childhood-Special-Education-and-Title-Services/Special-Education/Legal-Special-Education/Dispute-Resolution

Parent Organizations
Parent Teacher Association (PTA)
Kansas Congress of Parents and Teachers
715 SW 10th St.
Topeka, KS, 66612-1686
http://www.kansas-pta.org/
Parent Training and Information Center (PTI)
Families Together, Inc.
3033 W. Second, Suite 106
Wichita, KS, 67203
http://www.familiestogetherinc.org/
Partners in Policymaking
Kansas Developmental Disabilities Council
Docking State Office Building, Room 141
915 SW Harrison Street
Topeka, KS, 66612-1570
http://www.kcdd.org/

Preschool, Disabilities
Early Childhood
Kansas State Department of Education
900 SW Jackson St.
Topeka, KS, 66612-1182
http://www.ksde.org/Agency/Division-of-Learning-Services/Early-Childhood-Special-Education-and-Title-Services/Early-Childhood

Protection & Advocacy
Disability Rights Center of Kansas
635 SW Harrison Street, Suite 100
Topeka, KS, 66603
http://www.drckansas.org/

Relay Services
(800) 766-3777 (V)
(800) 766-3777 (TTY); 711 (TTY)
(866) 305-1344 (Speech to Speech)

Special Education
Special Education Services
Kansas State Department of Education
900 SW Jackson St.
Topeka, KS, 66612-1182
http://www.ksde.org/Agency/Division-of-Learning-Services/Early-Childhood-Special-Education-and-Title-Services/Special-Education

Special Format Library
Kansas State Library Talking Book Service
1 Kellogg Circle
PO Box 4055
Emporia, KS 66801-5415
http://kslib.info/153/Talking-Books

Special Health Care Needs
Services for Children with Special Health Care Needs
Department of Health and Environment
1000 SW Jackson Street, Suite 220
Topeka, KS, 66612-1274
Find regional offices:
http://www.kdheks.gov/shcn/

Speech, Language, and Hearing
Kansas Speech-Language-Hearing Association
6001 Cherokee Drive
Fairway, KS, 66205
http://www.ksha.org

UCEDD
Kansas University Center on Developmental Disabilities
University of Kansas
1052 Robert Dole Human Development Center
Lawrence, KS, 66045
(785) 864-4295
https://kucdd.ku.edu

Vocational Education and Rehabilitation
Academic and Technical Education
Kansas State Department of Education
(785) 296-7935
js****@**de.org
http://www.ksde.org/Agency/Division-of-Learning-Services/Career-Standards-and-Assessment-Services/CSAS-Home/Career-Technical-Education-CTE

Other Organizations
Goodwill Industries Easter Seals of Kansas, Inc.
3500 SW 10th Ave.
Topeka, KS 66604-1904
(785) 272-4060
http://www.easterseals.com/capper/
Kansas Federation of the Council for Exceptional Children
kr********@***sc.org
http://community.cec.sped.org/ks/home
Special Olympics Kansas
5280 Foxridge Drive
Mission, KS, 66202
(913) 236-9290
ks*@**so.org
Check website for regional offices and contacts
http://ksso.org/

Kentucky

Jean Bishop

KY, TN

My name is Jean Marie. I live in Louisville, KY. I am a single mother of an amazing SMSer, Nico. Nico was born in 2007 and diagnosed with SMS in 2008. I immediately joined PRISMS, Inc. to connect and for the support of other families that understand life with SMS. I work part time in administration for a residential provider for disabled adults and part time in a pediatric oncology inpatient unit as Registered Nurse. Annually, my family and I host a PRISMS fundraiser with the dream that PRISMS, Inc. will be able to offer even more support to SMS families in the future!

Email: ke******@*******ms.org

Kentucky Resources

ADA Center
Southeast ADA Center
1419 Mayson Street NE
Atlanta, GA, 30324
(800) 949-4232 (V/TTY)
(404) 541-9001 (V/TTY)
AD**********@*****yr.edu
http://www.adasoutheast.org

Assistive Technology
Kentucky Assistive Technology Service (KATS) Network
Charles McDowell Center
200 Juneau Drive – Ste 200
Louisville KY, 40234
(800) 327-5287 (V/TTY, in KY)
(502) 429-4484 (V/TTY);
http://www.katsnet.org

Autism
Autism Society of the Bluegrass
1405 E. Burnett Ave
Louisville, KY 40217
(502) 852-4631
(800) 334-8635
http://www.asbg.org
Kentucky Autism Training Center
College of Education and Human Development
University of Louisville
1405 E. Burnett Ave
Louisville, KY 40217
(502) 852-4631
(800) 334-8635
www.louisville.edu/education/kyautismtraining

CHIP
(health care for low-income uninsured children)
KCHIP
Cabinet for Health and Family Services
Office of the Secretary
275 E. Main Street
Frankfort, KY, 40621
(877) 524-4718
(800) 662-5397 (Spanish)
(877) 524-4719 (TTY)
http://www.kidshealth.ky.gov/

D D Council
Commonwealth Council on Developmental Disabilities
32 Fountain Place
Frankfort, KY, 40601
(877) 367-5332
https://councilondd.org/

Developmental Disabilities
The Council on Developmental Disabilities
1151 So. Fourth St
Louisville, KY 40202
502-584-1239
in**@*********dd.org
www.councilondd.org

Early Intervention
Kentucky Cabinet for Health and
Human Services
312 Whittington Parkway
Louisville, KY, 40222
(502) 429-1249
(800) 442-0087
http://chfs.ky.gov/

Epilepsy
Epilepsy Foundation of Kentuckiana
982 Eastern Parkway
Louisville, KY, 40217
(866) 275-1078
(502) 637-4440
http://www.efky.org

Independent Living
To find out the contact information for the Statewide
Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
(713) 520-0232 (V);
(713) 520-5136 (TTY)
il**@**ru.org
http://www.ilru.org
To find out the contact information for centers for
independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0334 (V);
(202) 207-0340 (TTY)
nc**@**il.org
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc of Kentucky
706 E. Main, Suite A
Frankfort, KY, 40601
(800) 281-1272
(502) 875-5225
ar*****@*ol.com
http://arcofky.org

Learning Disabilities
Learning Disabilities Association of Kentucky, Inc.
2210 Goldsmith Lane, Suite 118
Louisville, KY, 40218
(502) 473-1256
LD*****@***oo.com
http://www.LDAofky.org

Mediation
Office of Teaching and Learning
Division of Learning Services
300 Sower Blvd., 5th floor
Frankfort, KY, 40601
(502) 564-4970
http://www.education.ky.gov

Mental Health
Department for Mental Health/Developmental Disabilities and Addiction Services
Cabinet for Health and Family Services
100 Fair Oaks Lane, 4E-B
Frankfort, KY, 40621-0001
(502) 564-4527
http://dbhdid.ky.gov/kdbhdid/default.aspx
Children’s Behavioral Health and Recovery Services
275 E. Main St. 4WG
Frankfort, KY, 40621
(502) 564-4456
be*********@**.gov
http://dbhdid.ky.gov/dbh/children.aspx
Mental Health America of Kentucky
120 Sears Avenue, Suite 213
Louisville, KY, 40207
(888) 705-0463
(502) 893-0460
mh***@***ky.org
http://www.mhaky.org
Mental Health Association of Northern Kentucky
605 Madison Avenue
Covington, KY, 41011
(859) 431-1077
mh****@****ky.org
http://www.mhanky.org
NAMI Kentucky
Main Office
2441 S Hwy. 27
Somerset, KY 42501
(606) 677-4066
(800) 257-5081
http://namiky.org
Kentucky Mental Health Coalition
120 Sears Avenue, Suite 212
Louisville, KY, 40207
(502) 894-0222
ac**********@*******th.net
http://www.advocacyaction.net
Kentucky Partnership for Families and Children
207 Holmes Street, First Floor
Frankfort, KY, 40601
(800) 369-0533
(502) 875-1320
https://kypartnership.org/

Mental Health – Youth
Kentucky Cabinet for Health and Family Services
275 E. Main St.
Frankfort, KY, 40621
(502) 564-4456
be*********@**.gov
http://dbhdid.ky.gov/dbh/children.aspx

Parent Organizations
Kentucky Health and Family Services
Parent Advocacy
275 E. Main St.
Frankfort, KY, 40621
(800) 372-2973
https://councilondd.org/cms-view-page.php?page=family-support
Kentucky Parent Teacher Association (PTA)
P.O. Box 654
Frankfort, KY, 40602-0654
(502) 226-6607
Ke*********@*******th.net
http://www.kypta.org
Parent Training and Information Center (PTI)
Kentucky Special Parent Involvement Network (KY-SPIN)
801 N. 29th St
Paducah, KY 42001
270-444-9687
http://www.kyspin.com

Preschool, Disabilities
Division of Early Childhood Development
Department of Education
500 Mero Street, Capital Plaza Tower
Frankfort, KY, 40601
(502) 564-8341
http:// www.education.ky.gov

Protection & Advocacy
Kentucky Protection and Advocacy
100 Fair Oaks Lane, Third Floor
Frankfort, KY, 40601
(800) 372-2988 (V/TTY in KY)
(502) 564-2967
http://kypa.net/
State Coordinator for the Americans with Disabilities Act
500 Mero Street
Capital Plaza Tower, 2nd Floor
Frankfort, KY, 40601
(502) 564-3850
no********@**.gov
http://ada.ky.gov

Relay Services
(800) 648-6057 (V)
(800) 648-6056 (TTY/ASCII); 711 (TTY)
(888) 244-6111 (Speech to Speech)

Special Education
Division of Learning Services
Kentucky Department of Education
500 Mero Street
Frankfort, KY, 40601
(502) 564-4970
http://education.ky.gov/specialed/excep/Pages/default.aspx

Special Format Library
Kentucky Library for the Blind and Physically Handicapped
300 Coffee Tree Road
PO Box 537
Frankfort, KY, 40602-0818
(800) 372-2968
(502) 564-8300
KT*******@**.gov
www.kdla.ky.gov/librarians/talkingbook/pages/default.aspx

Special Health Care Needs
Commission for Children with Special Health Care Needs
310 Whittington Parkway, Suite 200
Louisville, KY, 40222
(502) 429-4430
(800) 232-1160
CC***********@**.gov
www.chs.ky.gov/ccshcn

Speech, Language, and Hearing
Kentucky Speech-Language-Hearing Association
838 East High Street, Suite 263
Lexington, KY, 40502
(800) 837-2446
ks********@**ha.info
http://ksha.info

Transition Services
Office of Teaching & Learning
Division of Learning Services
300 Sower Blvd., 5th floor
Frankfort, KY, 40601
(502) 564-4970
http://education.ky.gov/

UCEDD
University of Kentucky UCE
Human Development Institute
Office of the Vice President for Research
University of Kentucky
126 Mineral Industries Building
Lexington, KY, 40506-0051
(859) 257-1714
http://www.hdi.uky.edu

Vocational Rehabilitation
Office of Vocational Rehabilitation
Education and Workforce Development Cabinet
Department of Workforce Investment
275 East Main St, Mail Stop 2E-K
Frankfort, KY 40621
(502) 564-4440
WF**********@**.gov
http://ovr.ky.gov
Office of Career and Technical Education
300 Sower Blvd., 5th floor
Frankfort, KY, 40601
(502) 564-4286
http://www.education.ky.gov/CTE

Other Organizations
Easter Seals Kentucky
2050 Versailles Road
Lexington, KY, 40504
800) 888-5377
(859) 254-5701
http://www.cardinalhill.org
Kentucky Disabilities Coalition
859 E. Main St. A
Frankfort, KY, 40601
(502) 875-1871
United Way 2-1-1
100 Midland Ave, Ste 300
Lexington, KY 40508
(859) 233-4460
http://www.uwbg.org
Kentucky Education Rights Center, Inc.
256 Abbey Rd.
Versailles, KY, 40383
(859) 983-9222
VSA arts of Kentucky
515 E. 10th Ave.
Bowling Green, KY 42101
(207) 781-0872
di******@******ky.org
http://vsartsky.org

Louisiana

Heather Boney

My name is Heather Boney. We live in Lafayette Louisiana. My daughter Jayci is 11 and was diagnosed at 6 months old. We were given a genetics report and PRISMS information guide. She is the oldest of my two children and she can light up the entire room with her infectious smile! Life may not be exactly what we had planned but it truly is a good life. The resources and family connections are so important in learning to live life with SMS! I’m am looking forward to attending our first conference in Dallas July of 2020. I am looking forward to starting this journey of regional rep and hope I can help other SMS families. Please feel free to reach out if you have any questions or concerns.

Email: lo*******@*******ms.org

Ashton Cheramie

My name is Ashton Chermaine and I am representing South Louisiana and the Gulf Coast. My child is Krista and she is 29 and was born in 1989. She was diagnosed in October 2000. I have been affiliated with PRISMS for over 15 years. PRISMS has provided a vast amount of education and resources that has helped our daughter lead a productive life. I have 30 years of experience raising a SMS child and feel that I can provide a comforting voice of experience.

Email: lo*******@*******ms.org

Kim Wirth

LA, MS

My name is Kim Wirth. I am the Regional Representative for Louisiana and Mississippi. My daughter Evelyn was born in New Orleans in 1999. She received her SMS Mutation diagnosis in Texas at the age of 18. A few months after diagnosis, she moved into a group home and lived there for nearly 4 years. In January 2022 she moved home to Louisiana. Since moving home, Evelyn has reconnected with family, made many new friends, and joined the Happy Bowlers and Able Club social groups. She enjoys cooking, coffee, bowling, puzzles, and caring for our animals.

We attended our first conference in August 2022. What a wonderful experience! We connected with other SMS families, learned about the latest research, and found an incredibly supportive community. The best part of the conference was meeting wonderful, older SMSers who shared Evelyn’s zest for life. Our SMS journey has been filled with so many incredible experiences. Evelyn’s sense of humor keeps us all laughing. I could write a book filled with both joyful stories and challenges we have faced.

As a Regional Representative, I hope to support other families as they navigate the SMS diagnosis. SMS can be consuming and isolating. Developing a connection with others who understand your situation is priceless. I hope to help organize local gatherings and encourage family connections.

Email: lo*******@*******ms.org

Louisiana Resources

ADA Center
Southwest ADA Center
2323 S. Shepherd, #1000
Houston, TX, 77019
http://www.southwestada.org

Assistive Technology
Louisiana Assistive Technology Access Network
P.O. Box 14115
Baton Rouge, LA, 70898
http://www.latan.org

Autism
Autism Society of Lousiana
P.O. Box 80162
Baton Rouge, LA, 70898
http://www.lastateautism.org

CHIP
(health care for low-income uninsured children)
Louisiana Children’s Health Insurance Program
LaCHIP Processing Office
628 N. 4th Street
P. O. Bo 629
Baton Rouge, LA 70821-0629
http://new.dhh.louisiana.gov/index.cfm/page/222

D D Council
Louisiana Developmental Disabilities Council
P.O. Box 3455
Baton Rouge, LA, 70821-3455
sw******@****la.gov
http://www.laddc.org

Developmental Disabilities
Office for Citizens with Developmental Disabilities
P.O. Box 3117, Bin 21
Baton Rouge, LA, Baton Rouge
http://www.dhh.louisiana.gov

Early Intervention
Louisiana Part C Early Intervention
Office for Citizens with Developmental Disabilities
Louisiana Department of Health & Hospitals
P.O. Box 3117, Bin 21, 682 N. 4th Street
Baton Rouge, LA, 70802
http://www.earlysteps.dhh.louisiana.gov

Epilepsy
Epilepsy Foundation of Louisiana
3701 Canal Street, Suite H
New Orleans, LA, 70119
http://www.epilepsylouisiana.org

Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
2013 H St. NW – 6th Floor
Washington, DC, 20006
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc of Louisiana
8336 Kelwood Drive
Baton Rouge, LA, 70806
http://www.thearcla.org

Learning Disabilities
Division of Educational Improvement and Assistance
Louisiana Department of Education
P.O. Box 94064
Baton Rouge, LA, 70804-9064
http://www.louisianabelieves.com/academics/students-with-disabilities

Mediation
Dispute Resolution
Louisiana Department of Education
1201 North Third Street
Baton Rouge, LA 70802-5243
http://www.louisianabelieves.com/academics/students-with-disabilities/dispute-resolution

Mental Health
Office of Behavioral Health
Louisiana Department of Health and Hospitals
628 N. 4th Street, 4th Floor
P.O. Box 4049
Baton Rouge, LA, 70821-4049
http://new.dhh.louisiana.gov/index.cfm/subhome/10
Mental Health America of Louisiana
660 N. Foster Drive, Suite C-201
Baton Rouge, LA, 70806
http://www.mentalhealthamerica.net/mental-health-america-louisiana
NAMI Louisiana, National Alliance on Mental Illness
P.O. Box 40517
Baton Rouge, LA, 70835
(866) 851-6264
http://www.namilouisiana.org
Louisiana Federation of Families for Children’s Mental Health
5627 Superior Drive, Suite #2
Baton Rouge, LA, 70816-6085
(225) 293-3508

Parent Organizations
Community Parent Resource Center
(Serving greater New Orleans area)
Pyramid Community Parent Resource Center
3132 Napoleon Avenue
New Orleans, LA, 70125
http://www.pyramidparentcenter.org
Families Helping Families of Louisiana
(a statewide network of ten regional family resource centers)
100 Benman Rd. Lafayette, LA 70506
Lafayette, LA 70506
http://www.fhfla.org
Parent Teacher Association (PTA)
Louisiana Parent-Teacher Association
9151 Interline Avenue, suite 1A
Baton Rouge, LA, 70809
http://www.louisianapta.org/

Preschool, Disabilities
Division of Standards, Assessments and Accountability
Louisiana Department of Education
1201 North Third Street
P.O. Box 94064
Baton Rouge, LA 70802-5243
http://www.louisianabelieves.com/early-childhood/early-childhood-programs

Protection & Advocacy
Advocacy Center
8325 Oak Street
New Orleans, LA, 70118
http://www.advocacyla.org

Relay Services
(800) 947-5277 (V)
(800) 846-5277 (TTY); 711 (TTY)
(888) 550-5277 (ASCII)
(888) 272-5530 (Speech to Speech)
(800) 737-1813 (Spanish)

Speech, Language, and Hearing
Louisiana Speech-Language-Hearing Association
8550 United Plaza Boulevard, Suite 1001
Baton Rouge, LA, 70809
http://www.lsha.org

Special Education
Louisiana Department of Education
1201 North Third Street
P.O. Box 94064
Baton Rouge, LA 70802-5243
http://www.louisianabelieves.com/academics/students-with-disabilities

Special Format Library
State Library of Louisiana
Talking Books
701 N. Fourth Street
Baton Rouge, LA, 70802
http://www.state.lib.la.us/special-services/talking-books

Special Health Care Needs
Louisiana Department of Health and Hospitals
Office of Public Health
Children’s Special Health Services
1450 L & A Road
Metairie, LA, 70802
http://new.dhh.louisiana.gov/index.cfm/page/740
Families Helping Families
286 Highway 3185
Thibodaux, LA, 70301
(985) 447-4461
(800) 331-5570
Ba**********@***hf.org
http://blfhf.org

UCEDD
Louisiana UCEDDERS
LSUHSC- Human Development Center
School of Allied Health Professions
1900 Gravier Street 10th Floor Room 1036
New Orleans, LA, 70112
http://www.hdc.lsuhsc.edu

Vocational Education and Rehabilitation
Louisiana Workforce Commission
Vocational Rehabilitation Program
1001 N 23rd St
Baton Rouge, LA, 70802
(225) 342-3111
http://www.laworks.net/workforcedev/lrs/lrs_rehabilitation.asp

Other Organizations
Easter Seals Louisiana
1010 Common St., Suite 2000
New Orleans, LA, 70112-1617
http://www.louisiana.easterseals.com
Special Olympics Louisiana
1000 E. Morris Avenue
Hammond, LA, 70403
http://www.laso.org
Louisiana Occupational Therapy Association
P.O. Box 14806
Baton Rouge, LA, 70898
http://www.lota.org
Louisiana Health and Rehabilitation Center, Inc.
2121 Wooddale, Blvd
Baton Rouge, LA, 70806
http://www.lahealthandrehab.org
Louisiana Citizens for Action Now (LACAN)
Post Office Box 3455
626 Main Street, Suite A
Baton Rouge, LA 70821-3455
http://www.lacanadvocates.org
Governor’s Office of Disability Affairs
P.O. Box 94004
Baton Rouge, LA, 70804-9004
(225) 219-7550
(844) 860-1413
di****************@**.gov
http://gov.louisiana.gov/page/disability-affairs

Maine

Leah Baigell

CT, RI, MA, VT, NH, ME

Email: ma***@*******ms.org

Maine Resources

ADA Center
New England ADA Center
180-200 Portland Street, Suite 1
Boston, MA, 02114
http://www.newenglandada.org

Assistive Technology
Maine CITE
225 Western Ave.
Augusta, ME, 04330
(207) 621-3195
Maine Relay 711
In**@*******te.org
http://mainecite.org/

Career & Technical Education
Career and Technical Education Team
Department of Education
23 State House Station
Augusta, ME, 04333-0023
http://www.maine.gov/education/

CHIP
(health care for low-income uninsured children)
Maine CHIP
442 Civic Center Drive
Augusta, ME, 04333
http://www.medicaid.gov/medicaid-chip-program-information/by-state/maine.html

D D Council
Maine Developmental Disabilities Council
139 State House Station
225 Western Avenue
Augusta, ME, 04333
http://www.maineddc.org

Developmental Disabilities, Adults
Office of Aging and Disability Services
Department of Health and Human Services
41 Anthony Avenue – SHS#11
Augusta, ME 04333-0011
(207) 287-9200
http://www.maine.gov/dhhs/oads/

Epilepsy
Epilepsy Foundation Massachusetts, Rhode Island, New Hampshire & Maine
P.O. Box 1412 – Saco, ME 04072
Headquarters in Boston: 540 Gallivan Blvd, 2nd Floor – Boston, MA, 02124
http://www.epilepsynewengland.org/

Independent Living
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
(713) 520-0232 (V)
(713) 520-5136 (TTY)
il**@**ru.org
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org

Mediation
Office of Special Services, Due Process
23 State House Station
Augusta, ME, 04333-0023
http://www.maine.gov/education/speced/specserv.htm

Mental Health
Department of Health and Human Services
221 State Street
Augusta, ME, 04333
http://www.maine.gov/dhhs
NAMI Maine, National Alliance on Mental Illness
1 Bangor Street
Augusta, ME, 04330
http://www.namimaine.org

Mental Health – Youth
Children’s Behavioral Health Services
Department of Health and Human Services
2 Anthony Avenue
Augusta, ME, 04333
http://www.maine.gov/dhhs/ocfs/cbhs/

Parent Organizations
Parent Teacher Association (PTA)
Maine PTA
42 Damon Pasture Lane
Lakeville, ME, 04487
http://www.mainepta.org
Parent Training and Information Center (PTI)
Maine Parent Federation
10 Caldwell Road
P.O. Box 558
Augusta, ME, 04338-2067
http://www.mpf.org

Preschool, Disabilities
Child Development Services
23 State House Station
Augusta, ME, 04333
http://www.maine.gov/doe/cds/

Protection & Advocacy
Disability Rights Center
24 Stone Street, Suite 204
Augusta, ME, 04330
http://www.drcme.org

Relay Services
(800) 457-1220 (V)
(800) 437-1220 (TTY); 711 (TTY)
(800) 229-5746 (Speech to Speech-English)
(866) 260-9470 (Speech to Speech-Spanish)

Special Education
Department of Education
Office of Special Services
23 State House Station
Augusta, ME, 04333-0023
http://www.maine.gov/education/speced/specserv.htm

Special Format Library
Library Services for the Blind and Physically Handicapped
Maine State Library
64 State House Station
Augusta, ME, 04333-0064
http://www.maine.gov/msl/outreach

Special Health Care Needs
Department of Health and Human Services
Division of Population Health
286 Water St.
Augusta, ME 04333-0011
(207) 287-5357/(800) 698-3624
to*********@***ne.gov
http://www.maine.gov/dhhs/mecdc/population-health/mch/cshn/
Maxim Healthcare Services in Portland, Maine
7227 Lee Deforest Drive
Columbia, MD 21046 | 410-910-1500
www.maximhomecare.com
Home Health Care Visiting Nurses in South Maine
15 Industrial Park Road
Saco, Maine 04072
207-284-4566
www.homehealth.org

Speech, Language, and Hearing
Maine Speech-Language-Hearing Association
Strong Elementary School
110 N. Main Street
Strong, ME, 04983
https://mslha.memberclicks.net/

Transition Services
U Maine
Maine Autism Institute for Education and Research
5766 Shibles Hall
Orono, ME, 04469
http://umaine.edu

UCEDD
University Center for Excellence in Developmental Disabilities
The University of Maine
Center for Community Inclusion and Disability Studies
5717 Corbett Hall
Orono, ME, 04469-5717
http://www.ccids.umaine.edu

Vocational Rehabilitation
Bureau of Rehabilitation Services
Department of Labor
150 State House Station
Augusta, ME, 04333-0150
http://www.maine.gov/rehab/

Other Organizations
Pine Tree Society
Discovering abilities together
149 Front Street
Bath, ME, 04530
http://www.pinetreesociety.org

Maryland

Laura Russell

DC, MD

My name is Laura Russell, and I live in Maryland. My son, Adam, who was born in 1990, was initially diagnosed with autism and ADHD. In July 2021, further testing confirmed a genetic deletion associated with Smith-Magenis Syndrome. While a diagnosis is just a word, the PRISMS organization added depth and meaning to the diagnosis, offering me a better understanding. By exploring the PRISMS website, I was able to find clarity amidst the chaos I had experienced.

Through PRISMS, I discovered resources that validated my knowledge about my son but that I struggled to convey to others. The organization provided behavior management strategies that better suited our requirements. Moreover, PRISMS offers a wealth of resources, research, and a welcoming supportive community.

Traveling through life with Adam has been quite an adventure. The journey is ongoing but after 34 years I feel I have a perspective that has prepared me for the role of regional representative. I look forward to meeting others as they navigate life with their own SMSer.

Email: ma******@*******ms.org

Maryland Resources

ADA Center
Mid-Atlantic ADA Center
401 North Washington Street, Suite 450
Rockville, MD, 20805
http://www.adainfo.org

Assistive Technology
Maryland Technology Assistance Program
217 E Redwood Street
Baltimore, MD, 21202
http://mdod.maryland.gov

Autism
Autism Society of Baltimore-Chesapeake Chapter
PO Box 10822
Baltimore, MD, 21234
http://www.bcc-asa.org
Pathfinders for Autism
303 International Circle, suite 110
Hunt Valley, MD, 21030
http://www.pathfindersforautism.org

Career & Technical Education
Division of Career Technology and Adult Learning
200 W. Baltimore Street
Baltimore, MD, 21201
(401) 767-0635
je**************@******nd.gov
http://marylandpublicschools.org/programs/Pages/CTE/careerdevelopment.aspx

CHIP
(health care for low-income uninsured children)
Maryland Children’s Health Program
For referral to your local program call:
https://mmcp.dhmh.maryland.gov/chp/SitePages/Home.aspx

Department of Disabilities
217 E. Redwood Street, Suite 1300
Baltimore, MD, 21202
http://www.mdod.maryland.gov
Developmental Disabilities Administration
Department of Health and Mental Hygiene
201 W. Preston Street, Room 422C
Baltimore, MD, 21201
http://msa.maryland.gov/msa/mdmanual/16dhmh/html/16agen.html#developmental

Developmental Disabilities Council (DD Council)
Maryland Developmental Disabilities Council
217 E. Redwood Street, Suite 1300
Baltimore, MD, 21202
http://www.md-council.org

Early Childhood
Maryland State Department of Education
Special Education
200 W. Baltimore St.
Baltimore, MD, 21201
(410) 767-0238
ma*******************@******nd.gov
http://marylandpublicschools.org/programs/pages/special-education/index.aspx

Epilepsy
1340 Smith Ave., Suite 200
Baltimore, MD 21209
(800) 332-1000
(301) 9182100
http://www.epilepsy.com/local/maryland

Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc of Maryland, Inc.
121 Cathedral Street, 2B,
Annapolis, MD 21401
http://www.thearcmd.org

Learning Disabilities
LDA Maryland
P.O. Box 744
Dunkirk, MD, 20754
http://www.ldamd.org

Mediation
Office of Administrative Hearings
11101 Gilroy Road
Hunt Valley, MD, 21031
http://www.oah.state.md.us/

Mental Health
Mental Health Association of Maryland
Heaver Plaza
1301 York Road, Suite 505
Lutherville, MD 21093
http://www.mhamd.org
NAMI MD, National Alliance on Mental Illness of Maryland
10630 Little Patuxent Parkway, sSite 475
Columbia, MD, 21044
http://namimd.org
Mental Hygiene Administration
Department of Health and Mental Hygiene
201 W. Preston Street
Baltimore, Maryland 21201
http://dhmh.maryland.gov

Mental Health – Youth
Mental Hygiene Administration
Office of Child and Adolescent Services
Department of Health and Mental Hygiene
201 W. Preston Street
Baltimore, Maryland 21201
http://phpa.dhmh.maryland.gov/mch/SitePages/child_health.aspx

Parent Organizations
Maryland Coalition of Families for Children’s Mental Health
10632 Little Patuxent Parkway, Suite 119
Columbia, MD, 21044
http://www.mdcoalition.org
Parent Teacher Association (PTA)
Maryland PTA
5 Central Avenue
Glen Burnie, MD, 21061
http://www.mdpta.org
Parents’ Place of Maryland, Inc.
801 Cromwell Park Drive, Suite 103
Glen Burnie, MD, 21061
http://www.ppmd.org
Family Support Services, Division of Special Education
Maryland State Department of Education
200 W. Baltimore Street, 9th Floor
Baltimore, MD, 21201
http://www.marylandpublicschools.org/msde/divisions/earlyinterv/infant_toddlers/about/family_support_services.htm

Protection & Advocacy
Disability Rights Maryland
1500 Union Ave., Suite 2000
Baltimore, MD, 21211
(410) 727-6352/(800) 233-7201
http://disabilityrightsmd.org/

Relay Services
(800) 201-7165 (V/TTY)
(800) 735-2258 (TTY/HCO); 711 (TTY)
(888) 826-9673 (VCO)
(800) 785-5630 (Speech to Speech)
(877) 735-5151 (ASCII)
(877) 258-9854 (2-Line VCO)
(800) 877-1264 (Spanish)
(900) 344-3323 (pay per call, English)
(900) 344-4889 (pay per call, Spanish)

Special Education
Maryland State Department of Education
Division of Special Education/Early Intervention Services
200 W. Baltimore Street, 9th Floor
Baltimore, MD, 21201-2595
http://www.marylandpublicschools.org/MSDE/divisions/earlyinterv/
Division of Special Education/Early Intervention Services
Student Achievement and Professional Development
200 W. Baltimore Street, 9th Floor
Baltimore, MD, 21201
http://www.marylandpublicschools.org/MSDE/divisions/earlyinterv/

Special Format Books for Children and Youth
Maryland State Department of Education
200 W Baltimore St.
Baltimore, MD, 21201-2595
(410) 230-2424/(800) 964-9209
re************@******nd.gov
http://marylandpublicschools.org/about/pages/dlds/lbph/index.aspx

Special Health Care Needs
Office for Genetics & People With Special Health Care Needs
201 W. Preston, #421A
Baltimore, MD, 21201
http://phpa.dhmh.maryland.gov/genetics/SitePages/Home.aspx

Speech, Language, and Hearing
Maryland Speech-Language-Hearing Association
P.O. Box 31
Manchester, MD, 21102
(410) 239-7770
office@ mdslha.org

UCEDD
Maryland Center for Developmental Disabilities
Kennedy Krieger Institute
716 N. Broadway, Office 103
Baltimore, MD 21205
http://mcdd.kennedykrieger.org/

Vocational Rehabilitation
Maryland Department of Education
Division of Rehabilitation Services
2301 Argonne Drive
Baltimore, MD, 21218-1696
(410) 554-9442/(888) 554-0334
http://dors.maryland.gov/Pages/default.aspx

Other Organizations
Easter Seals Greater Washington-Baltimore Region, Inc.
1420 Spring Street
Silver Spring, MD 20910
http://www.easterseals.com/DCMDVA/
Easter Seals Delaware and Maryland’s Eastern Shore
61 Corporate Circle
New Castle, DE 19720
http://www.de.easterseals.com
Family Net Works Program
1001 Eastern Avenue, 2nd floor
Baltimore, MD, 21202
http://marylandfamilynetwork.org/
The Coordinating Center (for individuals with complex medical needs and disabilities)
8531 Veterans Highway, 3rd floor
Millersville, MD, 21108
http://www.coordinatingcenter.org
Abilities Network
8503 LaSalle Rd
Towson, MD 21286
(800) 492-2523
(410) 828-7700
www.abilitiesnetwork.org
Resource Finder
(information on developmental disability resources)
A project of Kennedy Krieger Institute
707 N. Broadway
Baltimore, MD, 21205
https://www.kennedykrieger.org/community/initiatives/resource-finder

Massachusetts

Leah Baigell

CT, RI, MA, VT, NH, ME

Email: ma***********@*******ms.org

Massachusetts SMS Clinic

Lexington (Greater Boston)

Lurie Center for Autism

Massachusetts General Hospital/MassGeneral Hospital for Children
Ages seen: All
Medical Director: Ann Neumeyer, MD
Email: Lu*********@******rs.org
Phone:781-860-1730
Web: www.luriecenter.org/

Massachusetts Resources

ADA Center
New England ADA Center
180-200 Portland Street, Suite 1
Boston, MA, 02114
http://www.newenglandada.org

Career and Technical Education
Department of Education
http://www.doe.mass.edu/cte/

CHIP
(Health care for low-income uninsured children)
Insure Kids Now
7500 Security Blvd.
Baltimore, MD 21244
(877) 543-7669
https://www.insurekidsnow.gov/about/faq/index.html

D D Council
Massachusetts Developmental Disabilities Council
100 Hancock Street, 2nd floor
Quincy, MA, 02171
http://www.mass.gov/mddc

Developmental Disabilities
Department of Developmental Services
Central Office:
500 Harrison Avenue
Boston, MA, 02118
http://www.mass.gov/dmr

Early Intervention
Early Intervention Program
Department of Public Health
250 Washington Street, 4th Floor
Boston, MA, 02108
http://www.mass.gov/eohhs/gov/departments/dph/programs/family-health/early-intervention/

Epilepsy
Epilepsy Foundation New England
Headquarters:
540 Gallivan Blvd., 2nd Floor
Boston, MA, 02124
http://www.epilepsynewengland.org/

Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org

Intellectual & Developmental Disabilities
The ARC of Massachusetts
217 South Street
Waltham, MA, 02453
(781) 891-6270
http://thearcofmass.org

Learning Disabilities
Learning Disabilities Worldwide
P.O. Box 142
Weston, MA, 02493
http://www.ldworldwide.org

Mediation
Bureau of Special Education Appeals
Department of Education
One Congress Street, 11th Floor
Boston, MA, 02114
http://www.doe.mass.edu/bsea

Mental Health
Department of Mental Health
One Ashburton Place, 11th Floor
Boston, MA 02108
http://www.mass.gov/dmh
NAMI Massachusetts
The Schrafft Center
529 Main Street, Suite 1M17
Boston, MA 02129
http:// www.namimass.org
Parent/Professional Advocacy League (PAL)
Statewide office:
45 Bromfield Street, 10th Floor
Boston, MA, 02108
(Central office in Worcester, MA)
http://www.ppal.net

Mental Health – Youth
Department of Mental Health
25 Staniford Street
Boston, MA, 02114
http://www.mass.gov/dmh

Parent Organizations
Community Parent Resource Center
Urban PRIDE (Serving the city of Boston)
One Westinghouse Plaza
Building D, Suite 11
Hyde Park, MA, 02136
(617) 206-4570
Parent Teacher Association (PTA)
Massachusetts PTA
405 Waltham Street, # 147
Lexington, MA 02421
http://www.masspta.org
Parent Training and Information Center (PTI)
Federation for Children with Special Needs
The Schrafft Center
529 Main Street, Suite 1102
Boston, MA, 02129
http://fcsn.org
Family TIES of Massachusetts
Massachusetts Department of Public Health
Donovan Health Building, 3rd Floor
5 Randolph Street
Canton, MA, 02021
http://www.massfamilyties.org

Preschool, Disabilities
Early Education and Care
51 Sleeper Street
Boston, MA, 02210
http://www.mass.gov/edu/birth-grade-12/early-education-and-care/

Protection & Advocacy
Disability Law Center, Inc.
11 Beacon Street, Suite 925
Boston, MA, 02108
http://www.dlc-ma.org

Relay Services
(800) 439-0183 (V)
(800) 439-2370 (TTY); 711 (TTY)
(800) 439-0183 (Speech to Speech)

Speech, Language, and Hearing
Massachusetts Speech-Language-Hearing Association
411 Waverley Oaks Road, Suite 331B
Waltham, MA 02452
http://www.MSHAHearSay.org

Special Education
Special Education Planning and Policy Development Office
Department of Education
75 Pleasant Street
Malden, MA 02148-4906
http://www.doe.mass.edu/sped

Special Format Library
Braille and Talking Book Library
Perkins School for the Blind
175 N. Beacon Street
Watertown, MA, 02472
http://www.perkinslibrary.org

Massachusetts State Web Site
Connect with your state’s official website to find all manner of state agencies and information, including how to contact your governor and/or your representatives in the Senate and House:
http://www.mass.gov

Transition Services
Special Education Planning and Policy Development Office
Massachusetts Department of Education
75 Pleasant Street
Malden, MA 02148-4906
http://www.doe.mass.edu/sped

UCEDD
Institute for Community Inclusion/UCEDD
University of Massachusetts Boston
100 Morrissey Blvd.
Boston, MA, 02125
http://www.communityinclusion.org
Eunice Kennedy Shriver Center
University of Massachusetts Medical School
55 Lake Avenue North, S3-301
Worcester, MA 01655
465 Medford Street, Suite 500
Charlestown, MA 02129
http://www.umassmed.edu/shriver

Vocational Rehabilitation
Massachusetts Rehabilitation Commission
One Ashburton Place
11th Floor
Boston, MA 02108
http://www.mass.gov/mrc/

Other Organizations
Easter Seals Massachusetts
(School transition services, assistive technology and augmentative communication assessments, therapy services, summer Camp, and low interest rate loans for assistive technology.)
484 Main Street
Worcester, MA, 01608
http://www.easterseals.com/ma/
New England INDEX
Shriver Center UMASS Medical School
University of Massachusetts Medical School
55 Lake Avenue North, S3-301
Worcester, MA 01655
http://www.disabilityinfo.org/
Home Modifications Loan Program for People with Disabilities
Disability Services
http://www.mass.gov/eohhs/consumer/disability-services/housing-disability/home-mod-loan/

Michigan

Michele Zdanowski

My name is Michele Zdanowski, and we have been PRISMS members for nearly 20 years. The first conference we attended was the Second Conference held in Arlington, Virginia. And that was just the beginning of our SMS friendships, and with each conference the SMS friendships and comradery continues to grow. Our daughter, Krista, was not diagnosed until the age of 6 years old. She spent most of her elementary years in inclusive general education. We spent a lot of time and effort advocating for her needs throughout her educational years. Here in Michigan school supported special education services continue until the age of 26, so now we are just beginning to navigate the next stages of her life needs and supports. I have always been so proud of PRISMS and the support it has to offer the families, friends, and healthcare professionals. I am so amazed of how wonderfully the organization has grown over the years. I am thrilled to be able to be a part of the Regional Representative program and I am looking forward to help and serve the SMS community.

Email: mi******@*******ms.org

Sherry Thompson

My name is Sherry Thompson and this is my 11-year-old granddaughter Kaydence. She was recently diagnosed with SMS. She has had over 23 surgeries and is an amazing child. Her endurance and strength continue to inspire me to push forward and work towards bringing more awareness to SMS and the resources and research that is being done to help children like her overcome those obstacles that challenge their overall health and well-being. Through this position as Regional Representative I hope to create meet and greets, raise awareness on a state level, and monies to further not only awareness, but increase the research that is needed. I look forward to working with you, your SMS individual and family, not only through our website, but also in a monthly newsletter and I cannot wait to hear your stories, gather resources and grow as an SMS community.

Sincerely,
Sherry Thompson

Email: mi******@*******ms.org

Michigan Resources

ADA Center
Great Lakes ADA Center
University of Illinois at Chicago
Institute on Disability & Human Development (MC 728)
1640 West Roosevelt Road, Room 405
Chicago, IL, 60608
(312) 413-1407 (V/TTY)
(800) 949-4232 (V/TTY)
http://www.adagreatlakes.org

Assistive Technology
Assistive Technology of Michigan
43000 W. Nine Mile Rd., Suite 113
Novi, MI 48375
(248) 348-7161
in**@******ch.com
atofmich.com
Michigan Disability Rights Coalition
3498 East Lake Lansing Rd, Ste 100
East Lansing, MI 48823
(517) 333-2477
(800) 760-4600
http://www.copower.org/assistive-tech
Michigan Alliance for Families
1325 S. Washington Ave.
Lansing, MI 48910
(800) 552-4821
in**@*************************es.org
http://www.michiganallianceforfamilies.org/

CHIP
(health care for low-income uninsured children)
MIChild
P.O. Box 30412
Lansing, MI, 48909
(888) 988-6300
(888) 263-5897 (TTY)
www.michigan.gov/mdch/1,1607,7-132-2943_4845_4931—,00.html

D D Council
Michigan Developmental Disabilities Council
201 Townsend St, Ste 120
Lansing, MI 48913
(517) 335-3158
md*************@******an.gov
http://www.michigan.gov/ddcouncil

Early Intervention
Michigan Department of Education
Office of Early Childhood Education and Family Services
13109 Schacey Road, Ste 4
DeWitt, MI 48820
(800) 327-5966
eo********@****ne.net
http://www.1800earlyon.org

Epilepsy
Epilepsy Foundation of Michigan
25200 Telegraph Rd, Ste 110
Southfield, MI 48033
(248) 351-7979
(800) 377-6226
le*****@**************an.org
http://www.epilepsymichigan.org

Independent Living
To find out the contact information for the Statewide
Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
(713) 520-0232 (V)
(713) 520-5136 (TTY)
il**@**ru.org
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory
To find out the contact information for centers for
independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0334 (V)
(202) 207-0340 (TTY)
nc**@**il.org
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc Michigan
1325 S. Washington Avenue
Lansing , MI, 48910
(517) 487-5426
(800) 292-7851
http://www.arcmi.org

Learning Disabilities
Learning Disabilities Association of Michigan
200 Museum Drive, Suite 101
Lansing, MI, 48933-1914
(517) 485-8160
(888) 597-7809
ld*****@*******al.net
http://www.ldaofmichigan.org

Mediation
Michigan Special Education Mediation Program
516 S. Creyts Rd, Suite A
Lansing, MI 48917
(517) 334-0034
(800) 873-7658
in**@***mp.org
https://msemp.cenmi.org/

Mental Health
Department of Community Health
Capitol View Building, 7th Floor
201 Townsend Street
Lansing, MI, 48913
(517) 373-3500
http://www.michigan.gov/mdch
Mental Health Association in Michigan
30233 Southfield Road, Suite 220
Southfield, MI, 48076
(248) 647-1711
ma**@****mi.org
http://www.mha-mi.com

Parent Organizations
Michigan Alliance for Families
Lansing Main Office
1325 S. Washington Avenue
Lansing, MI, 48910
(517) 492-5021
(800) 552-4821
in**@*************************es.org
http://www.michiganallianceforfamilies.org/
Parent Teacher Association (PTA)
Michigan Congress of Parents, Teachers and Students
1390 Eisenhower Place
Ann Arbor, MI 48108
(734) 975-9500
di******@*********ta.org
http://www.michiganpta.org
Parent Training and Information Center (PTI)
Michigan Alliance for Families – Region 1
3111 Grand River Avenue
Detroit, MI, 48208
(800) 552-4821
(313) 833-3883
ca********@*************************es.org
http://www.michiganallianceforfamilies.org
Parent Training and Information Center (PTI)
Michigan Alliance for Families – Region 2
1286 Pipestone, Suite A
Benton Harbor, MI, 49022
(800) 552-4821
(269) 934-9471
mi******@*************************es.org
http://www.michiganallianceforfamilies.org

Protection & Advocacy
Michigan Protection and Advocacy Service, Inc.
4095 Legacy Parkway, Suite 500
Lansing , MI, 48911-4263
(517) 487-1755 (V/TTY)
(800) 288-5923 (V/TTY)
http://www.mpas.org

Special Education
Office of Special Education and Early Intervention Services
Michigan Department of Education
608 W. Allegan St. PO Box 30008
Lansing, MI 48933
(517) 373-0923
md*****@******an.gov
http://www.michigan.gov/mde
Special Education Funding: Ages Birth Through 26
Office of Special Education and Early Intervention Services
Michigan Department of Education
P.O. Box 30008
Lansing , MI, 48909
(517) 373-0923
ea*********@**.gov

Special Health Care Needs
Children’s Special Health Care Services Division
Michigan Department of Community Health
320 S. Walnut
Lansing , MI, 48913
(517) 241-7186
(800) 359-3722
st*******@******an.gov
http://www.michigan.gov/cshcs

Transition Services
High School Redesign for Secondary Transition Services
Office of Special Education and Early Intervention Services
Michigan Department of Education
P.O. Box 30008
Lansing , MI, 48909-7508
(517) 373-0923
Ko*******@**.gov
http://www.michigan.gov/mde

UCEDD
Wayne State University
Developmental Disabilities Institute
4809 Woodward Avenue
268 Leonard N. Simons Building
Detroit, MI, 48202
(313) 577-2654
(888) 978-4334
DD*@***ne.edu
http://ddi.wayne.edu

Vocational Rehabilitation
Michigan Rehabilitation Services
Michigan Department of Labor & Economic Growth
P.O. Box 30010
Lansing , MI, 48909
(517) 373-0399
(800) 605-6722
http://www.michigan.gov/mrs
Office of Career and Technical Preparation
Michigan Department of Education
201 N. Washington Square
Lansing , MI, 48913
(517) 335-5858
http://www.michigan.gov/mdcd

Other Organizations
Easter Seals Michigan
2399 E. Walton Blvd
Auburn Hills, MI 48326
(248) 457-6400
(800) 757-3257 (in MI)
http://www.essmichigan.org

Minnesota

Carissa Le

MN, ND, SD

I’m Carissa Le, from Lakeville, MN (30 miles south of the Twin Cities). My daughter, Scarlet, is 11 years old. She was diagnosed at 16 months in September of 2008. I’ve been a member of PRISMS for a few years and have attended the last 2 international conferences. When my daughter was tested for SMS, my mom found the PRISMS website and shared it with me. My jaw dropped as I found “twins” from all over the world in pictures on the site. I knew SMS was the diagnosis before the testing was even complete. I’ve used the website and those I’ve met thru online boards to help me as questions arise.

I can be of assistance to others in my area by leading them to PRISMS, giving them pamphlets and other literature, and hosting get-togethers.

Email: mi*******@*******ms.org

Minnesota Resources

ADA Center
Great Lakes ADA Center
University of Illinois at Chicago
Institute on Disability & Human Development (MC 728)
1640 West Roosevelt Road, Room 405
Chicago, IL, 60608
(312) 413-1407 (V/TTY)
(800) 949-4232 (V/TTY)
http://www.adagreatlakes.org

Assistive Technology
STAR Program
358 Centennial Office Building
658 Cedar Street
St. Paul, MN, 55155<
(651) 201-2640
(888) 234-1267
(800) 627-2527 (TTY)
TTY: MN Relay at 711
http://www.mn.gov/admin/star/

CHIP
(health care for low-income uninsured children)
MinnesotaCare
P.O. Box 64838
St. Paul, MN, 55164-0838
(651) 431-2801
(800) 657-3672
(800) 627-3529 (TTY)
http://www.benefits.gov/benefits/benefit-details/607

D D Council
Minnesota Governor’s Council on Developmental Disabilities
370 Centennial Office Building
658 Cedar Street
St. Paul, MN, 55155
(651) 296-4018
(877) 348-0505
(800) 627-3529 (MN Relay service)
http://www.mncdd.org

Developmental Disabilities
Disabilities Service Division
Department of Human Services
540 Cedar Street
P.O. Box 64967
St. Paul, MN, 55164-0967
(651) 431-4300
http://www.dhs.state.mn.us

Early Intervention
Minnesota Department of Education
Division of Early Learning Services
1500 Highway 36 West
Roseville, MI, 55113-4266
(651) 582-8689
http://education.state.mn.us/MDE/index.html
MN Help Me Grow: Infant and Toddler Intervention
Minnesota Department of Education
(866) 693-4769
MD******@******mn.us
http://www.parentsknow.state.mn.us/parentsknow/index.html

Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact:
(713) 520-0232 (V)
(713) 520-5136 (TTY)
http://www.ilru.org/projects/silc-net/silc-directory-results/MN
Metropolitan Center for Independent Living
530 Robert Street North
Saint Paul, MN, 55101
(651) 646-2006
http://www.mcil-mn.org

Intellectual & Developmental Disabilities
The Arc of Minnesota
800 Transfer Road, Suite 7A
St. Paul, MN, 55114
http://www.TheArcofMinnesota.org

Learning Disabilities
Learning Disabilities Association of Minnesota
6100 Golden Valley Road
Golden Valley, Minnesota 55422
(952) 922-8374
http://www.ldaminnesota.org

Mental Health
Mental Health Association of Minnesota
475 Cleveland Avenue N – suite 222
Saint Paul, MN, 55104
(800) 862-1799
http://www.mentalhealthmn.org
NAMI-Minnesota (National Alliance on Mental Illness)
800 Transfer Road, Suite 31
St. Paul, MN, 55114
(651) 645-2948
(888) NAMI-HELPS
http://www.namihelps.org
Minnesota Association for Children’s Mental Health
165 Western Avenue, Suite 2
St. Paul, MN, 55102
(651) 644-7333
(800) 528-4511
in**@***mh.org
http://www.macmh.org
Department of Human Services
P.O. Box 64981
St. Paul, MN, 55164-0988
(651) 431-2225
http://mn.gov/dhs/
Children’s Mental Health Division
P.O. Box 64985
St. Paul, MN, 55164-0985
(651) 431-2321
http://mn.gov/dhs/

Parent Organizations
Parent Teacher Association (PTA)
Minnesota Congress of Parents, Teachers and Students
1667 Snelling Avenue North, suite 111
St. Paul, MN, 55108
(651) 999-7320
(800) 672-0993
http://www.mnpta.org
Parent Training and Information Center (PTI)
PACER Center, Inc.
8161 Normandale Boulevard
Minneapolis, MN, 55437-1044
(952) 838-9000
(952) 838-0190 (TTY)
(888) 248-0822(in MN)
http://www.pacer.org
P2P at Family Voices of Minnesota
(866) 334-8444
http://familyvoicesofminnesota.org
Partners in Policymaking
Government Training Services
2233 University Avenue West, Suite 150
St. Paul, MN, 55114
(651) 222-7409, ext. 205
http://www.mngts.org

Preschool, Disabilities
Minnesota Help Me Grow
Minnesota Department of Education
(866) 693-4769
MD******@******mn.us
http://helpmegrowmn.org/HMG/HelpfulRes/Articles/DoesMyChildNeedPreschoolSpecEd/index.html
Minnesota Department of Education
Early Childhood Special Education
1500 Highway 36 W
Roseville, MN 55113
(651) 582-8200
http://education.state.mn.us/MDE/fam/ecse/

Protection & Advocacy
Minnesota Disability Law Center
430 First Avenue, North, Suite 300
Minneapolis, MN, 55401-1780
(612) 332-1441
(800) 292-4150
http://www.mndlc.org

Relay Services
(800) 627-3529 (V/TTY/ASCII); 711 (V/TTY/ASCII)
(877) 627-3848 (Speech to Speech)
(877) 627-5448 (Spanish)
(900) 246-3323 (900 access)

Special Education
Minnesota Department of Education
Special Education Programs
1500 Highway 36 West
Roseville, MN, 55113-4266
(651) 582-8616
md************@******mn.us
http://education.state.mn.us/MDE/fam/sped/index.htm

Special Format Library
Minnesota Braille and Talking Book Library
400 SE 6th Ave
Faribault, MN, 55021-6340
(800) 722-0550
mn*****@******mn.us
http://education.state.mn.us/MDE/fam/mbtbl/index.htm

Special Health Care Needs
Family Voices of Minnesota
P.O. Box 2234
Stillwater, MN, 55082
http://www.familyvoicesofminnesota.org

Speech, Language, and Hearing
Minnesota Speech-Language-Hearing Association
1000 Westgate Drive, Suite 252
St. Paul, MN, 55114
(651) 290-6292
http://www.msha.net

UCEDD
Institute on Community Integration
University of Minnesota
College of Education and Human Development
102 Pattee Hall
150 Pillsbury Drive SE
Minneapolis, MN, 55455
(612) 624-6300
http://ici.umn.edu/

Vocational Rehabilitation
Rehabilitation Services Branch
Department of Employment and Economic Development
First National Bank Building
332 Minnesota Street, #E200
St. Paul, MN, 55101
(651) 296-7510
(800) 328-9095
http://mn.gov/deed/job-seekers/disabilities/

Other Organizations
Goodwill/Easter Seals
553 Fairview Avenue North
St. Paul, MN, 55104
(651) 379-5800 (V/TTY)
(800) 669-6719
http://www.goodwilleasterseals.org
Minnesota State Council on Disability
121 E. 7th Place, Suite 107
St. Paul, MN, 55101
(651) 361-7800 (V/TTY)
(800) 945-8913 (V/TTY)
http://www.disability.state.mn.us
VSA arts of Minnesota
The Cowels Center
528 Hennepin Avenue, Suite 305
Minneapolis, MN, 55403
(612) 332-3888
(800) 801-3883
http://www.vsamn.org

Mississippi

Kim Wirth

LA, MS

Email: mi*********@*******ms.org

Mississippi Resources

ADA Center
Southeast ADA Center
1419 Mayson Street NE
Atlanta, GA, 30324
(404) 541-9001 (V/TTY)
(800) 949-4232 (V/TTY)
AD**********@*****yr.edu
http://www.adasoutheast.org

Assistive Technology
Mississippi Project Start
P.O. Box 1698
Jackson, MS, 39215
(601) 987-4872 (V/TTY)
dy****@***********ms.us
http://www.msprojectstart.org

CHIP
(health care for low-income uninsured children)
Mississippi Health Benefits
Division of Medicaid
550 High Street, Suite 1000
Jackson, MS, 39201
(601) 359-6050
http://www.medicaid.ms.gov

D D Council
Council on Developmental Disabilities
1101 Robert E. Lee Building
239 N. Lamar St.
Jackson, MS, 39201
(601) 359-1270
http://www.mscdd.org

Developmental Disabilities
Mississippi Department of Mental Health
1101 Robert E. Lee Building
239 N. Lamar Street
Jackson, MS, 39201
(601) 359-1288
www.dmh.ms.gov/who-we-are/idd-programs

Independent Living
To find out the contact information for the Statewide
Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
il**@**ru.org
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory
To find out the contact information for centers for
independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0334
(202) 207-0340 (TTY)
nc**@**il.org
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc of Mississippi
704 North President St.
Jackson, MS 39202
(601) 355-0220
http://www.arcms.org

Early Intervention
First Steps Early Intervention System
Mississippi Department of Health
P.O. Box 1700
570 E. Woodrow Wilson
Jackson, MS, 39215-1700
(601) 576-7427
(800) 451-3903 (in MS)
we*@*******MS.com
www.msdh.ms.gov/msdhsite/_static/41,0,74.html

Mediation
Mississippi Department of Education
Office of Special Education
P.O. Box 771
Jackson, MS, 39205
(601) 359-3491
jb*****@********ms.us
http://www.mde.k12.ms.us

Mental Health
Department of Mental Health
1101 Robert E. Lee Building
239 N. Lamar Street
Jackson, MS, 39201
(601) 359-1288
ed********@**********ms.us
http://www.dmh.state.ms.us
Mental Health Association of Mississippi
4803 Harrison Circle
Gulfport, MS, 39507
(228) 864-6274
in**@************th.org
www.msmentalhealth.org
NAMI Mississippi
2618 Southerland St
Jackson, MS 39216
(800) 357-0388
st*********@****ms.org
http://namims.org/
Mississippi Families As Allies for Children’s Mental Health
840 E River Pl., Ste 500
Jackson, MS, 39202
(601) 355-0915
(800) 833-9671
http://www.faams.org/

Mental Health – Youth
Division of Children and Youth Services
Department of Mental Health
1101 Robert E. Lee Building
239 N. Lamar Street
Jackson, MS, 39201
(601) 359-1288
http://www.dmh.state.ms.us

Parent Organizations
SAFE KIDS Mississippi
2500 N. State St.
Jackson, MS, 39216
(601) 815-6212
ef*****@*mc.edu
https://www.safekids.org/coalition/safe-kids-mississippi
Parents for Public Schools of Jackson
125 S. Congress St, Ste 1218
Jackson, MS 39201
(800) 880-880-1222
www.parents4publicschools.org
Parents United Together
P.O. Box 2121
Madison, MS, 39130
Mo****@*ol.com
EMPOWER
741 Avignon Dr., Suite C
Ridgeland, MS 39157
(601) 980-1897
http://empowerms.org/
Parent Teacher Association (PTA)
Mississippi Congress of Parents and Teachers, Inc.
P.O. Box 1937
Jackson, MS, 39215
(601) 352-7383
Mi*****@***il.com
http://www.misspta.org
Parent Training and Information Center (PTI)
MS Parent Training and Information Center
2 Old River Place, Suite A
Jackson, MS, 39202
(601) 969-0601
(800) 721-7255
http://www.mspti.org

Protection & Advocacy
Disability Rights Mississippi
210 E Capitol St., Ste 600
Jackson, MS, 39201
(601) 968-0600 (V/TTY)
(800) 772-4057 (MS only)
in**@**ms.ms
http://www.drms.ms

Relay Services
(800) 582-2233 (V/TTY); 711 (TTY)
(800) 229-5746 (Speech to Speech-English)
(866) 260-9470 (Speech to Speech-Spanish)

Special Education
Mississippi Department of Education
Office of Special Education
PO Box 771
Jackson, MS 39205
(601) 359-3498
http://www.mdek12.org/OSE

Special Format Library
Mississippi Library Commission
Talking Book Services
3881 Eastwood Drive
Jackson, MS, 39211-6473
(601) 432-4116
(800) 446-0892
http://mlc.lib.ms.us/tbs/

Special Health Care Needs
Children’s Medical Program
Mississippi State Department of Health
P.O. Box 1700
Jackson, MS, 39215-1700
(601) 987-3965
(800) 844-0898 (National/WATS)
la************@***********ms.us
http://www.msdh.state.ms.us

Speech, Language, and Hearing
Mississippi Speech-Language-Hearing Association
P.O. Box 22664
Jackson, MS, 39225-2664
(800) 664-6742
http://www.mshausa.org

Transition Services
Office of Special Education
359 N West St., Suite 300
Jackson, MS, 39205
(601) 359-3498
http://www.mdek12.org/OSE/STS

UCEDD
The Institute for Disability Studies
University of Southern Mississippi
118 College Drive, #5163
Hattiesburg, MS, 39406-0001
(601) 266-5163
http://www.usm.edu/ids

Vocational Education and Rehabilitation
Career & Technical Education
Department of Education
P.O. Box 771
Jackson, MS, 39205-0771
(601) 359-3088
http://careertech.org/mississippi
Mississippi Office of Vocational Rehabilitation
Department of Rehabilitation Services
P.O. Box 1698
Jackson, MS, 39215-1698
(800) 443-1000
http://www.mdrs.ms.gov/VocationalRehab/Pages/default.aspx

Other Organizations
Institute for Disability Studies
Toy Library and Technology Learning Center
730 E. Beach Blvd.
Long Beach, MS, 95650
(228) 214-3223
sa**********@*sm.edu
https://www.usm.edu/ids/index.php

Missouri

Bernadette Huston

MO, OK

My name is Bernadette Huston. My husband, Percy Huston, is currently serving on the PRISMS Board. Our daughter is Jacqueline and she turned 27 in 2018. We have been a part of the PRISMS community since Jacqueline’s diagnosis when she was 13. I have had the pleasure of speaking at two conferences.

PRISMS has personally helped our family by being a resource for school, guardianship, health issues, education, and IEP, friendships with other parents that have SMS children, empathy and support from other SMS families. In addition, the PRISMS International Conference has provided the opportunity to meet other parents of SMS children and compare notes, tactics that work with discipline and life. I look forward to having regional gatherings with other local families. In the past, we have hosted two PRISMS walks and other SMS families have attended. We would love to see more SMS families join in the activity as it is fun for the whole family.

As your regional representative, I will do my best to provide you with helpful resources and create a support group to help families know that they are not alone.

Email: mi******@*******ms.org

Missouri Resources

ADA Center
Great Plains ADA Center
100 Corporate Lake Drive
Columbia, MO, 65203
(800) 949-4232 (V/TTY)
(573) 882-3600 (V/TTY)
http://www.gpadacenter.org

Assistive Technology
Missouri Assistive Technology
1501 NW Jefferson St.
Blue Springs, MO, 64015
(816) 655-6702
(800) 647-8557
http://www.at.mo.gov
CHIP (health care for low-income uninsured children)
MO HealthNet for Kids (MHK)
Missouri Department of Social Services
221 West High Street
P.O. Box 1527
Jefferson City, MO, 65102-1527
(888) 275-5908
http://www.dss.mo.gov/mhk/index.htm

D D Council
Missouri Planning Council for Developmental Disabilities
1706 E. Elm
P.O. Box 687
Jefferson City, MO, 65102
(573) 751-8611
(800) 500-7878
http://www.moddcouncil.org/

Developmental Disabilities
Division of Developmental Disabilities
1706 E. Elm
P.O. Box 687
Jefferson City, MO, 65102
(573) 751-8676
(800) 364-9687
https://www.dmh.mo.gov/dd

Early Intervention
Families First
Special Education Services, DESE
P.O. Box 480
Jefferson City, MO, 65102
(573) 592-2453
http://dese.mo.gov/special-education/early-childhood-special-education

Epilepsy
Epilepsy Foundation of Missouri & Kansas
4406 St. Vincent
Saint Louis, MO 63119
(314) 781-4949
(800) 264-6970
http://efmk.org

Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
(713) 520-0232 (V)
(713) 520-5136 (TTY)
http://www.ilru.org/projects/silc-net/silc-directory
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
2013 H St. NW – 6th floor
Washington, DC, 20006
(202) 207-0034 (V)
(202) 207-0340 (TTY)
http://www.ncil.org

Mediation
Special Education Compliance
Missouri Department of Elementary and Secondary Education
P.O. Box 480
Jefferson City, MO, 65102
(573) 751-4909
http://dese.mo.gov/special-education/compliance

Mental Health
Department of Mental Health
1706 East Elm
P.O. Box 687
Jefferson City, MO, 65102
(573) 751-3070
(800) 364-9687
http://www.dmh.mo.gov
Mental Health Association of Eastern Missouri
1905 S. Grand Boulevard
St. Louis, MO, 63104-1542
(314) 773-1399
http://www.mha-em.org
National Alliance on Mental Illness Missouri
3405 W Truman Blvd – Ste 102
Jefferson City, MO, 65109
(573) 761-5636
(800) 374-2138
http://namimissouri.org

Mental Health – Youth
Missouri Department of Mental Health
P.O. Box 687
Jefferson City, MO, 65102
(573) 751-4122
http://www.dmh.mo.gov

Parent Organizations
Missoui Department of Health & Senior Services
912 Wildwood
P.O. Box 570
Jefferson City, MO 65102-0570
(573) 751-6400
http://health.mo.gov/index.php
Parent Teacher Association (PTA)
Missouri Congress of Parents and Teachers
2101 Burlington Streeet
Columbia, MO 65202
(800) 328-7330
http://www.mopta.org
Parent Training and Information Center (PTI)
Missouri Parents Act (MPACT)
8301 State Line Road, Suite 204
Kansas City, MO, 64114
(800) 743-7634 (V/TTY)
http://www.ptimpact.org
Missouri Family to Family Resource Center
UMKC Institute for Human Development
A University Center for Excellence in Developmental Disabilities
215 W. Pershing, 5th Floor
Kansas City, MO, 64108
(800) 444-0821
http://mofamilytofamily.org

Protection & Advocacy
Partners in Policymaking
Missouri Developmental Disabilities Council
1706 E. Elm Street
P.O. Box 687
Jefferson City, MO, 65102
(573) 751-8611
(800) 500-7878 (in MO)
http://www.moddcouncil.org
Missouri Protection & Advocacy Services
925 S. Country Club Drive
Jefferson City, MO, 65109
(573) 893-3333
(800) 392-8667
http://www.moadvocacy.org

Relay Services
(800) 735-2466 (V)
(800) 735-2966 (TTY); 711 (TTY)
(877) 735-7877 (Speech to Speech)

Special Education
Office of Special Education
Department of Elementary and Secondary Education
205 Jefferson Streeet
Jefferson City, MO, 65101
(573) 751-5739
http://dese.mo.gov/special-education

Speech, Language, and Hearing
Missouri Speech-Language-Hearing Association
Central Office
2000 E. Broadway, PMB-296
Columbia, MO, 65201
(888) 729-6742
http://www.showmemsha.org

Special Format Library
Wolfner Talking Book and Braille Library
P.O. Box 387
Jefferson City, MO, 65102-0387
(573) 751-8720
(800) 392-2614 (in MO)
(800) 347-1379 (TTY/ in MO)
http://www.sos.mo.gov/wolfner

Special Health Care Needs
Department of Health and Senior Services
912 Wildwood
P.O. Box 570
Jefferson City, MO 65102-0570
(573) 751-6400
http://health.mo.gov/index.php

Transition Services
Special Education Effective Practices Section
Department of Elementary and Secondary Education
P.O. Box 480
Jefferson City, MO, 65102-0480
(573) 751-5739
http://dese.mo.gov/special-education/effective-practices

UCEDD
UMKC Institute for Human Development
215 W. Pershing, 6th Floor
Kansas City, MO, 64108
(816) 235-1770
(800) 452-1185 (TTY)
http://www.ihd.umkc.edu

Vocational Education, Disabilities
Civil Rights Compliance and Title IX Coordinator
Department of Elementary and Secondary Education
P.O. Box 480
Jefferson City, MO, 65102
(573) 526-4757
http://dese.mo.gov/governmental-affairs/civil-rights-compliance-moa

Vocational Rehabilitation
Division of Vocational Rehabilitation
Department of Elementary and Secondary Education
P.O. Box 480
Jefferson City, MO
65102-0480
(573) 751-3251
https://dese.mo.gov/adult-learning-rehabilitation-services/vocational-rehabilitation

Other Organizations
Easter Seals Midwest
13545 Barrett Parkway, Suite 300
Ballwin, MO 63021
(314)567-7705
http://www.eastersealsmidwest.org

Montana

Marni Rolston

My name is Marni Rolston, and I live in Bozeman, MT with my husband, Jed Huseby, and our daughter, Ida May (age 14) and our son, Sorin (age 10). Ida May was born in 2005, and we received her diagnosis of Smith Magenis Syndrome when she was 9 months old. Ida participated in the National Institutes of Health (NIH) “Natural History Study of Smith Magenis Syndrome”, and we met Ann Smith on Ida’s first birthday. I became a member of PRISMS in 2006, and have attended every conference since then.

I was interested in representing PRISMS and becoming a Regional Representative because I want to help families understand that even though the diagnosis of Smith Magenis Syndrome can be frightening and overwhelming, there is a strong community of support within PRISMS and from other families who experience this syndrome on a daily basis. I understand that living in a remote part of the country with limited access to health care, therapies and other SMS families can be difficult. I also understand the daily anxiety and exhaustion of trying to help and advocate for a child with a rare and sometimes difficult syndrome. I want families to feel free to contact me with any question, struggle or celebration they may want to share about their SMS child. And I want to help them feel empowered, knowing that there is a strong, vibrant community of people within PRISMS who can help them answer almost any question they may have about SMS.

Email: mo*****@*******ms.org

Montana Resources

ADA Center
Rocky Mountain ADA Center
3630 Sinton Road, Suite 103
Colorado Springs, CO, 80907
(719) 444-0268 (V/TTY)
(800) 949-4232 (V/TTY)
ad*****@************on.org
http://www.adainformation.org

Assistive Technology
MonTECH Program
The University of Montana, Rural Institute
634 Eddy Avenue, CHC-009
Missoula, MT, 59812
(406) 243-5676
(800) 732-0323 (V/TTY)
http://montech.ruralinstitute.umt.edu

CHIP
(Health care for low-income uninsured children)
Montana CHIP
P.O. Box 202951
Helena, MT, 59620-2951
(406) 444-6971
(877) 543-7669
CH**@**.gov
http://www.chip.mt.gov

Developmental Disabilities
Disability Services Division
Department of Public Health and Human Services
111 North Sanders
PO Box 4210
Helena, MT 59604-4210
(406) 444-2995
http://www.dphhs.mt.gov/dsd/

Independent Living
To find out the contact information for centers for
independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0034 (V)
(202) 207-0340 (TTY)
nc**@**il.org
http://www.ncil.org
Intellectual & Developmental Disabilities
The Arc of Montana
205 E Park Ave
Anaconda, MT 59711
(800) 432-6145/(406) 563-8117
mc******@*******nc.org
www.thearc.org
To find out the contact information for the Statewide
Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
(713) 520-0232 (V)
(713) 520-5136 (TTY)
il**@**ru.org
http://www.ilru.org

Learning Disabilities
Learning Disabilities Association of Montana
(888) 300-6711
http://www.ldaofmt.org

Mediation
Early Assistance Program
Montana Office of Public Instruction
P.O. Box 202501
Helena, MT, 59620-2501
(406) 444-5664
http://www.opi.mt.gov

Mental Health
Family Support Network (FSN)
1211 Grand, Suite 6
Billings, MT, 59102
(406) 256-7783
fs****@*ol.com
http://www.mtfamilysupport.org
Montana Mental Health Association
P.O. Box 88
Bozeman, MT, 59771
(406) 589-7774
(888) 927-6642
in**@*****************th.org
http://www.montanamentalhealth.org
Addictive and Mental Disorders Division
Department of Public Health and Human Services
P.O. Box 202905
Helena, MT, 59620-2905
(406) 444-3969
HH*******@**.gov
http://www.dphhs.mt.gov/

Mental Health – Children
Children’s Mental Health Bureau
Health Resources Division
Department of Public Health and Human Services
1400 Broadway – Cogswell Building – Room A116
P.O. Box 202951
Helena, MT, 59620-2951
(406) 444-4540
Check website for local offices
http://www.dphhs.mt.gov/mentalhealth/children

Parent Organizations
Parent Teacher Association (PTA)
IDEA PTA (Individuals with Diverse and Exceptional Abilities)
P.O. Box 7724
Missoula, MT, 59807
(406) 728-1124
lo***@****ky.net
Parent Teacher Association (PTA)
Montana Congress of Parents and Teachers, Inc.
P.O. Box 6448
Great Falls, MT, 59406
(406) 268-7475
mo*********@*********mt.us
http://www.montanapta.org
Parent Training and Information Center (PTI)
Parents, Let’s Unite For Kids (PLUK)
516 N. 32nd Street
Billings, MT, 59101-6003
(406) 255-0540
(800) 222-7585 (MT only)
pl******@**uk.org
http://www.mtpluk.org

Protection & Advocacy
Disability Rights Montana
1022 Chestnut Street
Helena, MT, 59601
(800) 245-4743 (V/TTY)
(406) 449-2344
ad******@****************mt.org
http://www.disabilityrightsmt.org

Preschool, Disabilities
Montana Office of Public Instruction
P. O. Box 202501
Helena, MT, 59620-2501
(406) 444-3095
(888) 231-9393
op*****@**.gov
http://www.opi.mt.gov

Special Health Care Needs
Children’s Special Health Services
Health Care Resources Bureau
Department of Public Health and Human Services
P. O. Box 202951
Helena, MT, 59620 -2951
(406) 444-3622
cs****@**.gov
http://cs****@**.gov

Special Format Library
Montana Talking Book Library
1515 E Sixth Avenue
P.O. Box 201800
Helena, MT, 59620-1800
(406) 444-2064
(800) 332-3400
http://msl.mt.gov/tbl/tbl.asp

Speech, Language, and Hearing
Montana Speech-Language-Hearing Association
Box 215
Miles City, MT, 59301
(406) 234-8727
in**@********ne.org
http://www.mshaonline.org

Transition Services
Division of Special Education
Office of Public Instruction
P.O. Box 202501
Helena, MT, 59620
(888) 231-9393
(406) 444-3095
th*****@**.gov
http://www.opi.mt.gov/Programs/SpecialEd/

UCEDD
The University of Montana Rural Institute
Center for Excellence in Disability Education, Research, and Service
52 Corbin Hall
Missoula, MT, 59812
(406) 243-5467
(800) 732-0322
(406) 243-5467 (TTY)
ru***@****************mt.edu
http://ruralinstitute.umt.edu

Vocational Rehabilitation
Vocational Rehabilitation Programs
Department of Public Health and Human Services
P. O. Box 4210
Helena, MT, 59604-4210
(877) 296-1197
(406) 444-2590
vr****@**.gov
http://www.dphhs.mt.gov/detd/vocrehab/index.shtml
Office of Public Instruction
P.O. Box 202501
Helena, MT, 59620-2501
(888) 231-9393
(406) 444-9019
http://www.opi.mt.gov/Programs/CTAE/index.html

Other Organizations
Easter Seals-Goodwill Northern Rocky Mountains, Inc.
4400 Central Avenue
Great Falls, MT, 59405
(406) 761-3680 (V/TTY);
(800) 771-2153
mi*******@**gw.org
http://www.esgw-nrm.easterseals.com
Support & Techniques for Empowering People (S.T.E.P.) Inc.
644 Grand Ave., Suite 1
Billings, MT, 59101
http://www.msubillings.edu/mtcd
Montana Center on Disabilities
Montana State University – Bozeman
(406) 994-6701 (V/TTY)
http://www.montana.edu
VSA arts of Montana
200 N. Adams, MCT, Broadway Studio
Missoula, MT, 59802
(406) 549-2984

Nebraska

Patty Loyer

AZ, NE

I love helping others in any way I can. If I don’t know how to, I will try my best to learn how.

Email: ne******@*******ms.org

Nebraska Resources

ADA CenterGreat Plains ADA Center
100 Corporate Lake Drive
Columbia, MO, 65203
http://www.gpadacenter.org/
Assistive TechnologyNebraska Assistive Technology Partnership
3901 N. 27th Street, Suite 5
Lincoln, NE, 68521
http://www.atp.ne.gov
D D CouncilNebraska Planning Council on Developmental Disabilities
Department of Health and Human Services
301 Centennial Mall South
P.O. Box 95044
Lincoln, NE, 68509
http://dhhs.ne.gov/pages/DD-Planning-Council.aspx
Developmental DisabilitiesDivision of Developmental Disabilities
Nebraska Department of Health and Human Services
301 Centennial Mall South, Lincoln, Nebraska
P.O. Box 98947
Lincoln, NE, 68509-8947
http://dhhs.ne.gov/Pages/Developmental-Disabilities.aspx
Early InterventionNebraska Department of Education
301 Centennial Mall South
P.O. Box 94987
Lincoln, NE, 68509-4987
http://edn.ne.gov/
Health carehttps://www.ehealthinsurance.com/nebraska-health-insurance
Independent LivingNebraska Statewide Independent Living Council
215 Centennial Mall South, Suite 210
Lincoln, NE, 68508
http://www.nesilc.org
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org
Intellectual & Developmental DisabilitiesThe Arc of Nebraska
1672 Van Dorn Street
Lincoln, NE, 68502
http://www.arc-nebraska.org
Mental HealthDivision of Behavioral Health Services
Nebraska Department of Health and Human Services
P.O. Box 98925
Lincoln, NE, 68509-8925
http://dhhs.ne.gov/Pages/Behavioral-Health.aspx
Nebraska Family Support Network
3568 Dodge Street, Suite #2
Omaha, NE, 68131-3222
http://nefamilysupportnetwork.org/
NAMI-Nebraska
1941 S. 42nd Street, Suite 517
Omaha, NE, 68105
https://naminebraska.org
Parent OrganizationsParent Teacher Association (PTA)
Nebraska Congress of Parents and Teachers
13304 W. Center Road, Suite 221
Omaha, NE, 68144
http://www.nebraskapta.org
Parent Training and Information Center (PTI) Nebraska
1941 S. 42nd St., Suite 205
Omaha, NE 68105
http://www.pti-nebraska.org
Parent to Parent Network
328 W. Norfolk Ave.
Norfolk, NE, 68701
http://www.parent-parent.org
Protection & AdvocacyDisability Rights Nebraska
134 South 13th Street, Suite 600
Lincoln, NE, 68508
http://www.disabilityrightsnebraska.org/
Relay Services(888) 272-5528 (Spanish)
(800) 833-0920 (V); 711 (TTY)
(800) 833-7352 (TTY/ASCII)
(888) 696-0629 (Fast ASCII)
(888) 272-5527 (Speech to Speech)
Special EducationOffice of Special Education
Nebraska Department of Education
301 Centennial Mall South
P.O. Box 94987
Lincoln, NE, 68509-4987
http://www.education.ne.gov/sped
Special Format LibraryNebraska Library Commission
Talking Book and Braille Service
The Atrium
1200 N Street, Suite 120
Lincoln, NE, 68508-2023
http://www.nlc.state.ne.us/tbbs
Special Health Care NeedsNebraska Department of Health and Human Services
301 Centennial Mall South
P.O. Box 95026
Lincoln, NE, 68509-5026
http://dhhs.ne.gov/Pages/default.aspx
Speech, Language, and HearingNebraska Speech-Language-Hearing Association
1633 Normandy Court, Suite A
Lincoln, NE 68512
http://www.nslha.org
State Web SiteConnect with your state’s official website to find all manner of state agencies and information, including how to contact your governor and/or your representatives in the Senate and House:
http://www.nebraska.gov
Transition ServicesSpecial Populations Office
Nebraska Department of Education
6949 S. 110th Street
Omaha, NE, 68128
https://www.education.ne.gov
UCEDDMunroe-Meyer Institute for Genetics and Rehabilitation
University of Nebraska Medical Center
985450 Nebraska Medical Center
Omaha, NE, 68198-5450
http://www.unmc.edu/mmi
Vocational Education, DisabilitiesSchool Counseling
Nebraska Department of Education
301 Centennial Mall South
P.O. Box 94987
Lincoln, NE, 68509-4987
https://www.vr.nebraska.gov
Vocational RehabilitationVocational Rehabilitation
Nebraska Department of Education
301 Centennial Mall South, 6th Floor
P.O. Box 94987
Lincoln, NE, 68509-4987
https://www.education.ne.gov/arra/vocational-rehabilitation/
Other OrganizationsThe Ollie Webb Center Pilot Parents
1941 S. 42nd Street, Suite 122
Omaha, NE, 68105
http://www.olliewebbinc.org
Easter Seals Nebraska
12565 West Center Road, Suite 100
Omaha, NE 68144-8144
http://www.easterseals.com/ne
Answers 4 Families
206 S. 13th Street, Suite 1000
Lincoln, NE, 68588-0227
http://www.answers4families.org
People First of Nebraska
Several chapters statewide
P.O. Box 5292 – Grand Island, NE 68802
http://www.peoplefirstnebraska.com

Nevada

No Regional Representative Currently Assigned

There is currently no regional representative for this area. If you have a question or would like to get connected, please email ne****@*******ms.org. This inbox is monitored by a broader distribution group who will do their best to find someone who can help.

Nevada Resources

ADA Center
Pacific ADA Center
555 12th Street, Suite 1030
Oakland, CA, 94607
(800) 949-4232 (V/TTY)
(510) 285-5600 (V/TTY
ad*****@********ic.org
http://www.adapacific.org

Assistive Technology
Nevada Assistive Technology Collaborative
Office of Disability Services
3656 Research Way, Suite 32
Carson City, NV, 89706
(775) 687-4452;
(775) 687-3388 (TTY)
kp******@*****nv.gov

Nevada Special Education Technology Assistance Project
P.O. Box 603
Carson City, NV, 89702
(775) 283-2315
ns****@*ol.com
http://www.nsetap.com/home.shtml

CHIP
(Health care for low-income uninsured children)
(800) 318-2596
Check website for local help
https://www.healthcare.gov/medicaid-chip/childrens-health-insurance-program/

D D Council
NV Governor’s Council on Developmental Disabilities
896 West Nye Lane, Ste. #202
Carson City, NV, 89703
(775) 684-8619
sm******@*****nv.gov

Developmental Disabilities
Nevada Division of Public and Behavioral Health
Department of Health and Human Services
Check website for various locations
(775) 684-4200
dp**@*******nv.gov
http://dpbh.nv.gov/About/DPBH_Overview/

Early Intervention
Department of Health and Human Services
Early Intervention Programs
(775) 684-4000
Check website for various offices
nv****@*****nv.gov
http://dhhs.nv.gov/Programs/IDEA/Early_Intervention_Programs/

Independent Living
To find out the contact information for the Statewide
Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
(713) 520-0232
(713) 520-5136 (TTY)
il**@**ru.org
http://www.ilru.org
Northern Nevada Center for Independent Living
999 Pyramid Way
Sparks, NV, 89431
(800) 552-5588
(775) 353-3599 V/TTY
nn****@*******al.net
http://www.nncil.org
Southern Nevada Center for Independent Living
6039 Eldora Avenue Suite H-8
Las Vegas, NV, 89146
(800) 870-7003
(702) 889-4216 V/TTY
in**@***il.org
http://www.sncil.org/

Intellectual & Developmental Disabilities
Opportunity Village
6300 W. Oakey Boulevard
Las Vegas, NV, 89146
(702) 259-3707
Gu*****@****************ge.org
http://www.opportunityvillage.org

Learning Disabilities
Learning Disabilities Association of America
4156 Library Road
Pittsburgh, PA, 15234
(888) 300-6710
(412) 341-1515
http://www.ldaamerica.org

Mediation
Nevada Department of Education
700 E. Fifth Street, Suite 113
Carson City, NV, 89701
(775) 687-9170
http://www.doe.nv.gov

Mental Health
Nevada Division of Public and Behavioral Health
Department of Health and Human Services
Check website for various offices
(775) 684-4200
dp**@*******nv.gov
http://dpbh.nv.gov/About/DPBH_Overview/
NAMI Nevada
680 S Rock Blvd
Reno, NV, 89502
(775) 336-3090
in**@********da.org
pr*******@********da.org
https://naminevada.org/

Mental Health – Youth
Division of Child and Family Services
Department of Human Resources
4126 Technology Way, 3rd Floor
Carson City, NV, 89706
(775) 684-4400
http://dcfs.state.nv.us

Parent Organizations
Parent Teacher Association (PTA)
Nevada Parent-Teacher Association
6134 W. Charleston Boulevard
Las Vegas, NV, 89146
(800) 782-7201
(702) 258-7885
of****@*******ta.org
http://www.nevadapta.org
Parent Training and Information Center (PTI)
Nevada PEP
2101 S. Jones Blvd, Suite 120
Las Vegas, NV, 89146
(800) 216-5188 (in NV)
(702) 388-8899
(775) 448-9950 Satellite Office Reno
pe*****@***ep.org
http://www.nvpep.org
Parent-To-Parent
Family TIES of Nevada
3100 Mill Street, Suite 117
Reno, NV, 89502
(866) 326-8437
(775) 823-9500
in**@**********nv.org
http://www.familytiesnv.net

Preschool, Disabilities
Office of Special Education, Elementary and Secondary
Education, and School Improvement Programs
Nevada Department of Education
700 E. Fifth Street, Suite 113
Carson City, NV, 89701
(775) 687-9170
http://www.doe.nv.gov

Protection & Advocacy
Nevada Disability Advocacy and Law Center
6039 Eldora Avenue, Suite C
Las Vegas, NV, 89102
(888) 349-3843 (toll-free)
(702) 257-8150
(702) 257-8160 (TTY)
nd***@*****lv.org
http://www.ndalc.org

Relay Services
(800) 326-6888 (V)
(800) 326-6868 (TTY); 711 (TTY)
(888) 326-5658 (Speech to Speech)

Special Education
Office of Special Education, Elementary and
Secondary Education, and School Improvement Programs
Nevada Department of Education
700 E. Fifth Street, Suite 113
Carson City, NV, 89701-5096
(775) 687-9142
fm*****@****nv.gov
http://www.doe.nv.gov

Special Format Library
Nevada Talking Book Services
100 North Stewart Street
Carson City, NV, 89701-4285
(800) 922-9334
(775) 684-3354
(775) 687-8338 (TTY)
ke******@*********nv.us
http://www.loc.gov/nls/braille-audio-reading-materials/find-a-local-library/

Special Health Care Needs
Title V – MCH & CYSHCN
Nevada State Health Division
Department of Health and Human Services
4150 Technology Way, Suite 210
Carson City, NV, 89706
(775) 684-4285
da*****@*******nv.gov
http://health.nv.gov
Family-to-Family Health Information Center at Family TIES of Nevada
3100 Mill Street, Suite #117
Reno, NV, 89502
(866) 326-8437 (toll free)
(775) 823-9500 (Reno office)
(702) 740-4200 (Las Vegas office)
in**@**********nv.org
http://www.familytiesnv.net

Speech, Language, and Hearing
Nevada Speech-Language and Hearing Association
P.O. Box 7313
Reno, NV, 89510-7313
(702) 452-9029
in**@***ha.org
http://www.nvsha.org

Transition Services
Nevada Department of Education
Office of Special Education
1820 E Sahara, Suite 208
Las Vegas, NV, 89104
(702) 486-6621
tv*******@****nv.gov
http://www.doe.nv.gov/

UCEDD
Nevada Center for Excellence in Disabilities
University of Nevada, Reno
Mail Stop 285
Reno, NV, 89557
(775) 784-4921
(800) 216-7988
(775) 327-5234 (TTY)
http://nced.info/

Vocational Education and Rehabilitation
Office of Career, Technical and Adult Education
Department of Education
700 E. Fifth Street, Suite 111
Carson City, NV, 89701-5096
(775) 687-9144
pd*****@****nv.gov
http://www.doe.nv.gov
Department of Employment, Training, and Rehabilitation
2800 E. St. Louis Ave., Las Vegas, NV 89104
500 East Third Street, Carson City, NV 89713
(775) 684-4040
de******@****tr.org
http://detr.state.nv.us/

Other Organizations
Disability Resources, Inc.
50 E Greg St., Suite 102
Sparks, NV, 89431
(775) 329-1126
in**@*******************nv.org
http://www.disabilityresourcesnv.org/
Easter Seals Sierra Nevada
6100 Neil Road, Suite 201
Reno, NV, 89511
(800) 228-7102
(775) 322-6555
in**@***********nv.org
http://www.sierra.easterseals.com
Easter Seals Nevada (various locations)
6200 W. Oakey Boulevard
Las Vegas, NV, 89146
(702) 870-7050
bp*******@***********sn.org
http://www.easterseals.com/nevada/
VSA arts of Nevada
At the Lake Mansion
250 Court Street
Reno, NV, 89501
(775) 826-6100
ta***@*******da.org
http://vsanevada.org

New Hampshire

Leah Baigell

CT, RI, MA, VT, NH, ME

Email: ne**********@*******ms.org

New Hampshire Resources

ADA Center
New England ADA Center
180-200 Portland Street, Suite 1
Boston, MA, 02114
http://www.newenglandada.org

Assistive Technology
Institute on Disability/UCED
10 W. Edge Dr., Suite 101
Durham, NH, 03824
(603) 862-4320
https://iod.unh.edu/projects/assistive-technology-new-hampshire-atinnh

Career & Technical Education
New Hampshire Department of Education
Bureau of Career Development
101 Pleasant Street
Concord, NH
http://www.education.nh.gov/career/career/index.htm

D D Council
New Hampshire Council on Developmental Disabilities
2 1/2 Beacon Street
Concord, NH 03301-4447
http://www.nhcdd.org

Developmental Disabilities
Bureau of Developmental Services
129 Pleasant Street
Concord, NH, 03301
http://www.dhhs.nh.gov

Early Intervention
Family-Centered Early Supports and Services
Bureau of Developmental Services
129 Pleasant Street
Concord, NH, 03301
http://www.dhhs.nh.gov/dcbcs/bds/earlysupport/index.htm

Epilepsy
Epilepsy Foundation New England
PO Box 1336
Meredith, NH 0325
http://www.epilepsynewengland.org
****

Health Insurance
https://www.healthinsurance.org/new_hampshire-state-health-insurance-exchange/

Independent Living
New Hampshire Statewide Independent Living Council
c/o Governor’s Commission on Disability
57 Regional Drive
Concord, NH, 03301
http://www.nh.gov/disability/silc
Granite State Independent Living
21 Chenell Drive
Concord, NH, 03301
http://www.gsil.org

Mediation
New Hampshire Department of Education
Office of Legislation and Hearings
101 Pleasant Street
Concord, NH, 03301
http://www.education.nh.gov/legislation/hearings.htm

Mental Health
Bureau of Behavioral Health
List of Community Health Centers
105 Pleasant Street
Concord, NH, 03301
http://www.dhhs.nh.gov/dcbcs/bbh/centers.htm
Granite State Federation of Families for Children’s Mental Health
c/o ACS
340 Commercial Street, 2nd Floor
Manchester, NH, 03101
http://www.nh4youth.org/families-youth/granite-state-federation-families-childrens-mental-health
NAMI New Hampshire
(National Alliance on Mental Illness New Hampshire)
15 Green Street
Concord, NH, 03301
http://www.naminh.org

Parent Organizations
Parent Teacher Association (PTA)
New Hampshire PTA
24 Maxwell Drive
Derry, NH 03038
http://www.nhpta1.org
Parent Information Center (PIC)
54 Old Suncook Road
Concord, NH 03301
http://www.picnh.org

Preschool, Disabilities
Bureau of Special Education
New Hampshire Department of Education
101 Pleasant Street
Concord, NH, 03301
http://education.nh.gov/instruction/special_ed/preschool.htm

Protection & Advocacy
Disabilities Rights Center, Inc.
64 North Main Street, Suite 2, 3rd Floor
Concord, NH 03301
http://www.drcnh.org

Relay Services
(800) 735-2964 (V/TTY); 711 (TTY)
(877) 735-1245 (Speech to Speech)

Special Education
Bureau of Special Education
New Hampshire Department of Education
101 Pleasant Street
Concord, NH, 03301
http://education.nh.gov/instruction/special_ed/index.htm

Special Format Library
Talking Book Services, New Hampshire State Library
117 Pleasant Street
Concord, NH, 03301
http://www.nh.gov/nhsl/talking_books

Special Health Care Needs
New Hampshire Family Voices
129 Pleasant St.
Concord, NH, 03301
http://www.nhfv.org

Speech, Language, and Hearing
New Hampshire Speech-Language-Hearing Association, Inc.
P.O. Box 1538
Concord, NH, 03302-1538
http://www.nhslha.org
****

UCEDD
Institute on Disability/UCED
57 Regional Drive, Unit 8
Concord, NH, 03301
http://www.iod.unh.edu/Home.aspx

Vocational Rehabilitation
New Hampshire Department of Education
21 S. Fruit Street, Suite 20
Concord, NH, 03301
http://education.nh.gov/career/vocational/contact.htm

Other Organizations
Governor’s Commission on Disability
121 South Fruit Street, Suite 101
Concord, NH, 03301-8518
http://www.nh.gov/disability
Easter Seals New Hampshire
555 Auburn Street
Manchester, NH, 03103
http://www.eastersealsnh.org
Education-A-Must (advocacy services for children with disabilities)
P.O. Box 216
East Derry, NH, 03041-0216
http://www.education-a-must.com
New Hampshire Challenge
P.O. Box 579
Dover, NH, 03821-0579
http://www.nhchallenge.net
VSA arts of New Hampshire
P.O. Box 78
Wentworth, NH, 03282
http://www.vsaartsnh.org

New Jersey

Randi Tanenbaum

NY,NJ

My name is Randi Tanenbaum from Manalapan, NJ. I am one of the Regional Representatives for New York and New Jersey. Our daughter Marnie, was born in 2016 and was diagnosed with SMS at 4 years of age. There are so many reasons why I feel compelled to represent PRISMS- when my family and I received our diagnosis the ONLY resource we had was PRISMS. The content from the site and the people we have spoken to has been invaluable. Without PRISMS we would be lost. This is a community of people who truly care about their families and I want to do the same locally.

Email: ne*******@*******ms.org

Ilse Ciprich

My name is Ilse Ciprich, and I am the regional representative in NJ. My son Christopher was diagnosed at 5-6 months old and is now 23 years old (2024). We have been members of PRISMS since 2002. Before finding PRISM we were really lost on how to help our son and we felt so alone. It has been a Blessing to learn more about Smith-Magenis Syndrome and to meet other families that have gone through similar situations with dealing with our child and with SMS. I would like to think that having a child with SMS has made me a better person. I am not judgmental when I see a child misbehave. I now have understanding and compassion. I know how difficult it is to deal with the ups and downs of handling SMS and the school systems. I’m here and a good listener if you wish to contact me. Thank you. It is a Pleasure to be of assistance.

Email: ne*******@*******ms.org

New Jersey Resources

ADA Center
Northeast ADA Center
Employment and Disability Institute
Cornell University
201 Dolgen Hall
Ithaca, NY, 14853
(800) 949-4232 (V/TTY/Spanish)
(607) 255-6686 (V/TTY/Spanish)
no**********@*****ll.edu
http://www.northeastada.org

Autism
The Daniel Jordan Fiddle Foundation
P.O. Box 1149
Ridgewood, NJ, 07451-1149
(609) 588-8200 Ext 22
(800) 4-autism
info@ djfiddlefoundation.org
http://www.djfiddlefoundation.org
Autism New Jersey
500 Horizon Drive, Suite 530
Robbinsville Township, NJ, 08691
(609) 588-8200, Ext. 22
(800) 4-AUTISM
in*********@******nj.org
http://www.autismnj.org
POAC (Parents of Autistic Children)
1999 Route 88
East Brick, NJ, 08724
(732) 785-1099
in**@**ac.net
http://www.poac.net
FACES Autism Support Network
PO Box 2341
Ventnor, NJ, 08406
(609) 412-3750
fa********@*****st.net
http://faces4autism.org/

CHIP
(health care for low-income uninsured children)
New Jersey Family Care
P.O. Box 8367
Trenton, NJ, 08650-4818
(800) 701-0710
http://www.njfamilycare.org

D D Council
New Jersey Council on Developmental Disabilities
20 W. State St.
Trenton, NJ, 08625
(609) 292-3745
njcdd@njcdd@org
https://njcdd.org/

Developmental Disabilities
Division of Developmental Disabilities
New Jersey Department of Human Services
P.O. Box 726
Trenton, NJ, 08625-0726
(609) 631-2200
(800) 832-9173
ke*************@**********nj.us
http://www.state.nj.us/humanservices/ddd/home/

Early Intervention
Department of Health and Senior Services
Division of Family Health Services
Early Intervention System
50 E. State Street
P. O. Box 364
Trenton, NJ, 08625-0364
(888) 653-4463 (NJEIS Referral)
(609) 777-7734
(800) 322-8174 (Childfind Birth-21)
www.njeis.org

Epilepsy
Epilepsy Foundation of New Jersey
1 AAA Drive
Suite 203
Trenton, NJ, 08691
(800) 336-5843
(609) 392-4900
http://www.efnj.com

Independent Living
To find out the contact information for the Statewide
Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
(713) 520-0232 (V)
(713) 520-5136 (TTY)
il**@**ru.org
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory
To find out the contact information for centers for
independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0334 (V)
(202) 207-0340 (TTY)
nc**@**il.org
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc of New Jersey
985 Livingston Avenue
North Brunswick, NJ, 08902-1843
(732) 246-2525
in**@***nj.org
http://www.arcnj.org

Learning Disabilities
Learning Disabilities Association of New Jersey
P.O. Box 6268
East Brunswick, NJ, 08816
(732) 645-2738
in**@***nj.org
http://www.ldanj.org

Mediation
Office of Special Education Programs
New Jersey Department of Education
100 Riverview Plaza
P.O. Box 500
Trenton, NJ, 08625-0500
(609) 984-1286
877-900-6960
http://www.state.nj.us/education/

Mental Health
New Jersey Department of Human Services
Division of Mental Health and Addiction Services
Check website for specific phone numbers
DM***@**********nj.us
http://www.state.nj.us/humanservices/dmhas/home/
Mental Health Association in New Jersey
88 Pompton Avenue, Suite 1
Verona, NJ, 07044
(973) 571-4100
in**@***nj.org
http://www.mhanj.org
NAMI New Jersey
1562 Route 130
North Brunswick, NJ, 08902
(732) 940-0991
in**@****nj.org
http://www.naminj.org/

Mental Health – Youth
New Jersey Department of Children and Families
PO Box 729
Trenton, NJ, 08625-0729
(855) 463-6323
http://www.nj.gov/dcf/about/divisions/dcsc/

Preschool, Disabilities
Office of Special Education Programs
New Jersey Department of Education
100 Riverview Plaza
P. O. Box 500
Trenton, NJ, 08625-0500
(609) 984-4950
sp***************@**********nj.us
http://www.state.nj.us/

Parent Organizations
Special Parent Assistance & Resource Center (SPARC)
UCP of Hudson County, Inc.
721 Broadway
Bayonne, NJ, 07002
(201) 436-2200
ucpofhudsoncounty.org
New Jersey Parents Caucus
275 Rt 10 East, Suite 220-414
Succasunna, NJ 07876
(908) 994-7471
http://www.newjerseyparentscaucus.org
Parent Teacher Association (PTA)
New Jersey Congress of Parents and Teachers
8 Quackerbridge Plaza
Mercervile, NJ 08619
(609) 587-0100
nj***@***ta.org
http://www.njpta.org
Parent Training and Information Center (PTI)
Statewide Parent Advocacy Network (SPAN)
35 Halsey Street, 4th Floor
Newark, NJ, 07102
(800) 654-7726 (In NJ)
(973) 642-8100
sp**@****nj.org
http://www.spanadvocacy.org
New Jersey Statewide Parent-to-Parent
1010 B Tuckerton Rd.
Marlton, NJ 08053
(856) 983-3328
http://www.parent2parentnj.org/
Community Parent Resource Center
Association for Special Children & Families
PO Box 494
Hewitt, NJ, 07421
(973) 728-8744
http://www.ascfamily.org

Protection & Advocacy
Disability Rights New Jersey
210 S. Broad Street, 3rd Floor
Trenton, NJ, 08608
(800) 922-7233 (in NJ)
(609) 292-9742
(609) 633-7106 (TTY)
ad******@**nj.org
http://www.drnj.org

Relay Services
State: New Jersey
(800) 852-7897 (V)
(800) 852-7899 (TTY); 711 (TTY)
(800) 229-5746 (Speech to Speech – English)
(866) 260-9470 (Speech to Speech – Spanish)

Special Education
Office of Special Education Programs
New Jersey Department of Education
100 Riverview Plaza
P. O. Box 500
Trenton, NJ, 08625-0500
(609) 292-0147
(877) 900-6960
http://www.state.nj.us/education

Special Format Library
New Jersey Library for the Blind and Handicapped
2300 Stuyvesant Avenue
Trenton, NJ, 08618
(800) 792-8322
(609) 530-3239
nj***@********ib.org
http://www.njlbh.org/

Special Health Care Needs
Special Child Health and Early Intervention Services
Division of Family Health
Public Health Services Branch
New Jersey Department of Health and Senior Services
P.O. Box 364
Trenton, NJ, 08625-0364
(609) 984-0755
gl**************@**********nj.us
www.state.nj.us/health/fhs/sch/index.shtml
Family Voices of New Jersey, at SPAN
35 Halsey Street, 4th floor
Newark, NJ, 07102
(800) 654-SPAN, ext. 110
(973) 642-8100
sp**@****nj.org
http://www.familyvoices.org

Speech Language and Hearing
New Jersey Speech-Language Hearing Association
66 Witherspoon St, Suite 337
Princeton, NJ 08542
(888) 906-5742
in**@***ha.com
http://www.njsha.org

State Web Site
Connect with your state’s official website to find all manner of state
agencies and information, including how to contact your governor
and/or your representatives in the Senate and House:
http://www.state.nj.us/

Transition Services
Office of Special Education Programs
New Jersey Department of Education
Riverview Executive Plaza
Building 100 Route 29
P.O. Box 500
Trenton, NJ, 08625
(609) 633-6431
http://www.state.nj.us/education

UCEDD
The Boggs Center on Developmental Disabilities
Department of Pediatrics
Rutgers Robert Wood Johnson Medical School
335 George Street, Suite 3500
New Brunswick, NJ, 08901
(732) 235-9300
http://rwjms.rutgers.edu/boggscenter

Vocational Education and Rehabilitation
Office of Career and Technical Education
New Jersey Department of Education
100 Riverview Plaza
P. O. Box 500
Trenton, NJ, 08625-0500
(609) 633-0665
http://nj.gov/education/cte/
New Jersey Division of Labor and Workforce Development
1 John Fitch Plaza
Trenton, NJ 08625-0110
co*******************@****nj.gov
http://careerconnections.nj.gov/careerconnections/plan/foryou/disable/vocational_rehabilitation_services.shtml

Other Organizations
Alliance for the Betterment of Citizens with Disabilities
127 Route 206, Suite 18
Hamilton, NJ, 08610
(609) 581-8375
http://www.abcdnj.org
Easter Seals New Jersey
25 Kennedy Blvd, Ste 600
East Brunswick, NJ 08816
(800) 486-0027
(732) 257-6662
http://www.eastersealsnj.org
Family Support Center of New Jersey
35 Beaverson Blvd
Brick, NJ 08723
(800) 372-6510 (in NJ)
(732) 528-8080
http://www.fscnj.org
New Jersey Mentor
Rehabilitative and Support Services for Persons with Acquired Brain Injury
505 S. Lenola Road
Blason Office Plaza II, Suite 217
Moorestown, NJ, 08057
(856) 235-5505
pa********@**************rk.com
http://www.thementornetwork.com
New Jersey Self-Help Group Clearinghouse
(free help to those seeking to find or start a local or national
support group)
375 E. McFarlan Street
Dover, NJ, 07801
(800) 367-6274 (in NJ)
(973) 989-1122
**@************ps.org
http://www.njgroups.org
VSA arts of New Jersey
703 Jersey Avenue
New Brunswick, NJ, 08901
(732) 745-3885
(732) 745-3913 (TTY)
in**@***nj.org
http://www.vsanj.org

New Mexico

Alejandro and Delma Aguilar

My name is Alejandro and my wife is Delma. We have three girls: Delilah (our 9 year old SMSer), Micaela (7 years old), and Sarai (3 years old). We live in New Mexico. My wife is an amazing homemaker who is active in the community and schools. I work full time as an analyst for the US Government. We have been members of PRISMS for 6 or 7 years (time sure does fly). Our Delilah has grown tremendously over the past few years, thanks to all the help and services. She reads at or above her grade level and is one of her favorite activities. She does well at school and thanks to an amazing teacher and support staff at the school. Her “outbursts” are saved for us at home (lucky us). The family has adapted at working with/around her and we still have fun. We take trips several times a year and they go fairly well. Lots of thinking and planning ahead of time to make sure we have a way out of situations for Delilah and those around her. Overall, the drawbacks of SMS have been hard but overtime and with lots of advice from friends, our church, and family (blood and SMS community) we feel like we live a typical (yet exciting) life.

Email: ne*******@*******ms.org

New Mexico Resources

ADA CenterSouthwest ADA Center
2323 S. Shepherd, #1000
Houston, TX, 77019
http://www.southwestada.org
Assistive TechnologyNew Mexico Technology Assistance Program
625 Silver Ave. SW Ste. 100 B
Albuquerque, NM 87102
http://www.tap.gcd.state.nm.us
D D CouncilNew Mexico Developmental Disabilities Planning Council
625 Silver Avenue SW, Suite 100,
Albuquerque, New Mexico 87102
http://www.nmddpc.com
Developmental DisabilitiesDevelopmental Disabilities Supports Division
New Mexico Department of Health
Harold Runnels Building
1190 S. St. Francis Drive
Santa Fe, NM 87505
https://nmhealth.org/about/ddsd
Early InterventionFamily Infant Toddler Program
New Mexico Department of Health
Harold Runnels Building
1190 S. St. Francis Drive
Santa Fe, NM 87505
http://nmhealth.org/about/ddsd/pgsv/fit/
Information Center for New Mexicans with Disabilities
BabyNet (for information about medical and support services for pre-natal, infants, toddlers, and individuals with disabilities)
2300 Menaul, N.E.
Albuquerque, NM, 87107
http://www.cdd.unm.edu/infonet/babynet.html
Health Carehttps://www.bewellnm.com
Independent LivingFor your Statewide Independent Living Council, contact:
Independent Living Research Utilization
2323 S. Shepherd, Suite 1000
Houston, TX, 77019
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/NM
Intellectual & Developmental DisabilitiesThe Arc of New Mexico
3655 Carlisle, N.E.
Albuquerque, NM, 87110
http://www.arcnm.org
MediationJerry Apodaca Education Building
300 Don Gaspar
Santa Fe, NM 87501
http://www.ped.state.nm.us/ped/index.html
Mental HealthBehavioral Health Collaborative
New Mexico Human Services Department
P .O. Box 2348 – Santa Fe, NM, 87504
37 Plaza La Prensa – Santa Fe, NM 87507
http://www.hsd.state.nm.us/Behavioral_health_services_division.aspx
New Mexico Children, Youth and Families Department Family Services
P .O. Box 5160
Santa Fe, NM, 87502-5160
https://cyfd.org
NAMI-New Mexico
2015 Wyoming Blvd. NE, Suite E
Albuquerque, NM 87112
http://naminewmexico.org
Parents OrganizationsCommunity Parent Resource Center (Serving the 22 Tribes of New Mexico)
Education for Parents of Indian Children with Special Needs (EPICS)
1600 San Pedro Dr. NE
Albuquerque, NM, 87110
http://www.epicsnm.org
New Mexico PTA
1100 Cardenas SE
Albuquerque, NM 87108
(505) 881-0712
http://www.newmexicopta.org/
Parents Reaching Out (P .R.O.)
1920 B Columbia, S.E.
Albuquerque, NM, 87106
http://www.parentsreachingout.org
Preschool, DisabilitiesEarly Childhood Special Education
Public Education Department
300 Don Gaspar Avenue
Santa Fe, NM, 87501-2786
http://ped.state.nm.us/ped/LiteracyEarlyChildhoodEd_PreK_index.html
Protection & AdvocacyDisability Rights New Mexico
1720 Louisiana Boulevard, NE, Suite 204
Albuquerque, NM, 87110
http://www.drnm.org
Protection & AdvocacyNative American Disability Law Center
3535 E. 30th Street
Farmington, NM, 87402
http://www.nativedisabilitylaw.org
Relay Services(800) 659-1779 (V)
(800) 659-8331 (TTY); 711 (TTY)
(888) 659-3952 (Speech to Speech)
Special EducationSpecial Education Bureau Public Education Department
300 Don Gaspar Avenue
Santa Fe, NM, 87501-2786
http://www.ped.state.nm.us
Special Format LibraryNew Mexico Library for the Blind and Physically Handicapped
1209 Camino Carlos Rey
Santa Fe, NM, 87507-5166
http://www.nmstatelibrary.org/lbph
Special Health Care NeedsChildren & Youth with Special Health Care Needs Program
New Mexico Department of Health
2040 S. Pacheco, Room 226B
Santa Fe, NM, 87505
https://nmhealth.org/publication/view/guide/4582/
Speech, Language, and HearingNew Mexico Speech-Language-Hearing Association
P .O. Box 87125
Albuquerque, NM, 87125
http://www.nmsha.net
State Web SiteConnect with your state’s official website to find all manner of state agencies and information, including how to contact your governor and/or your representatives in the Senate and House: http://www.state.nm.us
Transition ServicesPublic Education Department Special Education Bureau
300 Don Gaspar Avenue
Santa Fe, NM, 87501
http://www.ped.state.nm.us/seo/transition/index.htm
UCEDDUniversity of New Mexico
Center for Development and Disability
2300 Menaul Blvd NE
Albuquerque, NM, 87107
http://cdd.unm.edu
Vocational Education, DisabilitiesPublic Education Department
Career-Technical and Workforce Education Bureau
300 Don Gaspar Avenue
Santa Fe, NM, 87501
http://www.ped.state.nm.us/ctweb/programs.html
Division of Vocational Rehabilitation
435 St. Michaels Drive, Building D
Santa Fe, NM, 87505
(800) 224-7005
(505) 954-8500
(505) 954-8562
http://www.dvr.state.nm.us/
Other OrganizationsTo learn about independent living centers in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org
Governor’s Commission on Disabilities
491 Old Santa Fe Trail
Santa Fe, NM 87501-2753
http://www.gcd.state.nm.us
New Mexico Behavioral Health Collaborative
37 Plaza La Prensa
Santa Fe, NM 87507
http://www.bhc.state.nm.us
Easter Seals Santa Maria El Mirador
2041 S. Pacheco Street, Suite 100
http://www.easterseals.com/elmirador/
VSA arts of New Mexico
4904 Fourth Street, N.W.
Albuquerque, NM, 87107
http://www.vsartsnm.org

New York

Callihan Marshall

Callihan joined the PRISMS team as a Regional Representative for New York in September 2018. She’s very familiar with Smith-Magenis Syndrome. Her older sister, Briahna who is 28, was diagnosed with the disorder at 11 years old. Callihan and her family then turned to PRISMS conferences to get a quick education so they could mold their life to best fit Briahna’s needs. Conferences showed them that they weren’t alone in the world when it came to seeking help, so Bri could live the best life possible.

17 years later, they still go to conferences to make sure they’re up to date on any new developments. Callihan has been a caretaker for her sister since age 12. Bri went to her prom, she also went up to her college and stayed in the dorms. It’s very important to Callihan that her sister gets to experience the same joys in life that she does. Callihan has 26 years of experience growing up with her sister. She knows her sister’s needs and she knows how to be her sister’s voice, and she wants to do the same for other families in Central New York. She received education through PRISMS, and she’s excited to share that experience with families across her region.

Email: ne*****@*******ms.org

Randi Tanenbaum

NY,NJ

Email: ne*****@*******ms.org

New York Resources

ADA Center
Northeast ADA Center
Employment and Disability Institute
201 Dolgen Hall
Cornell University
Ithaca, NY, 14853
http://www.northeastada.org

Assistive Technology
NYS Justice Center
161 Delaware Ave
Delmar, NY, 12054
(518) 549-0200
https://www.justicecenter.ny.gov/services-supports/assistive-technology-traid
New York State Department of Health
Assistive Technology
https://www.health.ny.gov/facilities/long_term_care/waiver/nhtd_manual/section_06/assistive_technology.htm
CHIP (healthcare for low-income uninsured children)
NY State of Health
https://nystateofhealth.ny.gov/

D D Council
NYS Developmental Disabilities Planning Council
One Commerce Plaza, Suite 1230
Albany, NY 12210
http://ddpc.ny.gov

Developmental Disabilities
NYS Office for People with Developmental Disabilities
44 Holland Avenue
Albany, NY, 12229
Contact form on web site
http://www.opwdd.ny.gov/

Early Intervention
Bureau of Early Intervention
NYS Department of Health
Corning Tower, Room 287
Empire State Plaza
Albany, NY, 12237-0660
http://www.health.ny.gov/community/infants_children/early_intervention/

Epilepsy
Epilepsy Foundation of Long Island
1500 Hempstead Turnpike
East Meadow, NY 11554
http://efli.org

Intellectual & Developmental Disabilities
NYSARC, Inc.
29 British American Blvd. – 2nd Floor,
Latham, NY 12110
http://www.nysarc.org

Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
http://www.ilru.org/projects/silc-net/silc-directory-results/NY
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
2013 H St. NW, 6th Floor
Washington, D.C. 20006
http://www.ncil.org

Mediation
New York State Education Department
Office of Special Education
89 Washington Avenue, Room 309 EB
Albany, NY, 12234
http://www.p12.nysed.gov/specialed/techassist/mediation.htm

Mental Health
NYS Office of Mental Health
44 Holland Avenue
Albany, NY, 12229
http://www.omh.ny.gov/
Mental Health Association in NYS
194 Washington Avenue, Suite 415
Albany, NY, 12210
http://www.mhanys.org
NAMI New York State
99 Pine Street, Suite 302
Albany, NY, 12207
http://www.naminys.org
Families Together in New York State, Inc.
737 Madison Avenue
Albany, NY, 12208
http://www.ftnys.org

Mental Health – Youth
Children’s Services
NYS Office of Mental Health
44 Holland Avenue
Albany, NY, 12229
https://www.omh.ny.gov/omhweb/childservice/

Preschool, Disabilities
New York State Education Department
Office of Special Education
Preschool Unit
89 Washington Avenue, Room 309 EB
Albany, NY, 12234
http://www.p12.nysed.gov/specialed/

Protection & Advocacy
Disability Rights New York
725 Broadway, Suite 450 – Albany, NY, 12207
25 Chapel Street, Suite 1005 – Brooklyn, New York 11201
44 Exchange Blvd, Suite 110 – Rochester, New York 14614
http://www.drny.org

Relay Services
(800) 421-1220 (V); 711 (V)
(800) 662-1220 (TTY); 711 (TTY)
(877) 662-4234; 711 (Speech to Speech)
http://www.nyrelay.com

Special Education
New York State Education Department
Office of Special Education
89 Washington Avenue, Room 309 EB
Albany, NY, 12234
http://www.p12.nysed.gov/specialed

Special Format Books
Serving upstate New York
NYS Talking Book and Braille Library
Cultural Education Center
222 Madison Avenue
Albany, NY, 12230
http://www.nysl.nysed.gov/tbbl/
Special Format Books
Serving New York City and Long Island
Andrew Heiskell Braille and Talking Book Library
40 West 20th Street
New York, NY, 10011
http://www.nypl.org/locations/heiskell

Special Health Care Needs
Children and Youth with Special Health Care Needs Program
New York State Department of Health
Corning Tower Building – Empire State Plaza
Albany, NY, 12237-0619
http://www.health.state.ny.us/community/special_needs

Speech, Language, and Hearing
NYS Speech-Language-Hearing Association, Inc.
1971 Western Avenue #1167
Albany, NY 12203
http://www.nysslha.org

State Web Site
Connect with your state’s official website to find all manner of state agencies and
information, including how to contact your governor and/or your representatives in
the Senate and House:
http://www.ny.gov/

Transition Services
New York State Education Department
Office of Special Education
Special Education Policy, Transition Services
89 Washington Ave., Room 309 EB
Albany, NY, 12234
http://www.p12.nysed.gov/specialed/transition/home.html

UCEDD
Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities in affiliation with New York Medical College
Cedarwood Hall
Valhalla, NY, 10595-1689
http://www.wihd.org
Rose F. Kennedy University Center for Excellence in Developmental Disabilities Education, Research, and Service
Albert Einstein College of Medicine
1410 Pelham Parkway South
Yeshiva University
Bronx, NY, 10461
https://www.einstein.yu.edu/centers/childrens-evaluation-rehabilitation/rose-f-kennedy-ucedd/
Strong Center for Developmental Disabilities
University of Rochester
601 Elmwood Avenue, Box 671
Rochester, NY, 14642
https://www.urmc.rochester.edu/strong-center-developmental-disabilities.aspx

Vocational Rehabilitation
New York State Education Department
Adult Career and Continuing Education Services, Vocational Rehabilitation
89 Washington Avenue
Albany, NY, 12234
http://www.acces.nysed.gov/vr/

Organizations for Parents
Parent Network of WNY
1000 Main St.
Buffalo, NY, 14202
http://parentnetworkwny.org
Community Parent Resource Center
United We Stand of New York
91 Harrison Ave
Brooklyn, NY 11206
http://www.uwsofny.org
The Family Resource Network, Inc
(Serving Otsego, Chenango, Delaware, Broome, Tioga, and Tompkins counties)
46 Oneida Street
Oneonta, NY, 13820
http://www.familyrn.org
New York State Parent Teacher Association (PTA)
One Wembley Court
Albany, NY, 12205-3830
http://www.nyspta.org
Starbridge
1650 South Avenue, Suite 200
Rochester, NY 14620
http://www.starbridgeinc.org
Parent Training and Information Center (PTI)
Advocates for Children of New York (New York City)
151 W. 30th Street, 5th Floor
New York, NY, 10001
http://www.advocatesforchildren.org
Include NYC
116 E. 16th Street, 5th Floor
New York, NY, 10003
http://www.includenyc.org
Parent Training and Information Center (PTI)
Sinergia/Metropolitan Parent Center
2082 Lexington Ave., 4th Floor
New York, NY, 10035
http://www.sinergiany.org
Parent to Parent of NYS
500 Balltown Rd.
Schenectady, NY, 12304
http://www.parenttoparentnys.org

Other Organizations
Easter Seals New York
633 Third Avenue 6th Floor
New York, NY 10017
http://www.ny.easter-seals.org
VSA arts of New York City
45 Main Street, Suite 616
Brooklyn, NY 11201
http://www.vsanyc.org

North Carolina

Erin Morrison

My name is Erin Morrison, I live in Sylva, which is a small town located in the mountains of Western North Carolina with my husband, Daniel, and our two children, Kailee and Mitchell. Mitchell was diagnosed with SMS in 2020 shortly after his 4th birthday. When the developmental-behavioral pediatrician called to inform us of the diagnosis we were relieved to finally have an answer, yet that began a long road of not only educating ourselves but those around Mitchell. I joined PRISMS shortly after Mitchell’s diagnosis and have shared the information from the PRISMS website countless times. We were lucky enough to travel to Houston, TX to visit an SMS clinic. The clinic was amazing, and I highly recommend visiting one if you have an opportunity. We are looking forward to a return visit.

I am excited to be a Regional Representative for NC and help other families navigate this new road. It can seem overwhelming at times but the love that individuals with SMS show, far outweighs the challenging behaviors. I have often thought if we, as adults, would show affection like those with SMS do, the world would be a much better place. I look forward to serving my area and I hope you will reach out.

Email: no***********@*******ms.org

North Carolina Resources

ADA Center
Southeast ADA Center
1419 Mayson Street NE
Atlanta, GA, 30324
http://www.adagreatlakes.org

Assistive Technology
North Carolina Assistive Technology Program
Department of Health and Human Services
Division of Vocational Rehabilitation Services
1110 Navaho Drive, Suite 101
Raleigh, NC, 27609-7322
(800) 662-7030
(919) 855-4800
http://www.ncdhhs.gov

CHIP
(Health care for low-income uninsured children)
Insure Kids Now
7500 Security Blvd.
Baltimore, MD 21244
(877) 543-7669
https://www.insurekidsnow.gov/coverage/nc

D D Council
North Carolina Council on Developmental Disabilities
3125 Poplarwood Court, Suite 200,
Raleigh, NC, 27607
(919) 850-2901/(800) 3
http://www.nccdd.org

Developmental Disabilities
Developmental Disability Services Team
Division of Mental Health
Developmental Disabilities and Substance Abuse Services
Department of Health and Human Services
3005 Mail Service Center
Raleigh, NC, 27699-3005
http://www.ncdhhs.gov

Early Intervention
Women’s and Children’s Health Section
Division of Public Health
NC Infant-Toddler Program
1916 Mail Service Center
Raleigh, NC, 27699-1916
(919) 707-5520
http://beearly.nc.gov

Epilepsy
Epilepsy Foundation of North Carolina, Inc.
Piedmont One, Ste 5541 A
1920 W. First Street
Winston Salem, NC 27104
www.epilepsync.org

Independent Living
To find out the contact information for the Statewide
Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Shepherd, Suite 1000
Houston, TX, 77019
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/NC
To find out the contact information for centers for independent
living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc of North Carolina
343 E. Six Forks Road, Suite 320
Raleigh, NC, 27609
http://www.arcnc.org

Learning Disabilities
Learning Disabilities Association of North Carolina
LD*******************@***il.com
https://ldaamerica.org/lda-chapters/north-carolina/

Mental Health
Mental Health Association in North Carolina
3701 Latrobe Drive, Ste 140
Charlotte, NC 28211
www.mhacentralcarolinas.org
NAMI – North Carolina
309 W. Millbrook Road, Suite 121
Raleigh, NC, 27609
http://www.naminc.org

Mediation
North Carolina Department of Public Instruction
Exceptional Children Division
6356 Mail Service Center
Raleigh, NC, 27699-6356
https://ec.ncpublicschools.gov/parent-resources/dispute-resolution

Mental Health
Division of Mental Health
Developmental Disabilities and Substance Abuse Services
Department of Health and Human Services MSC: 3001
Raleigh, NC, 27699-3001
http://www.ncdhhs.gov/mhddsas/index.htm

Mental Health – Youth
Community Policy Management
Division of Mental Health
Developmental Disabilities and Substance Abuse Services
Department of Health and Human Services
3007 Mail Service Center
Raleigh, NC, 27699-3007
http://www.ncdhhs.gov

Parent Organizations
Community Parent Resource Center
(Serving Burke, Caldwell, Catawba, McDowell and Alexander Counties)
HOPE Parent Resource Center
PO Box 11395
Hickory, NC, 28603
http://www.fsnhope.org
Community Parent Resource Center
(Serving Buncombe, Haywood, Henderson, Madison, Polk, Rutherford, Transylvania and Yancey Counties)
F.I.R.S.T.
P.O. Box 802
Asheville, NC, 28802
http://www.FIRSTwnc.org
First in Families of North Carolina
3109 University Drive, Ste 100
Durham, NC 27707
http://www.fifnc.org
NAMI NC Young Families
309 W. Millbrook Road, Suite 121
Raleigh, NC, 27609
www.naminc.org
North Carolina Families United, Inc.
The Center for Youth, Family and Community Partnerships
University of North Carolina at Greensboro
209 B. North Graham Hopedale Rd
Burlington, NC 27127
http://www.ncfamiliesunited.org
Parent Teacher Association (PTA)
North Carolina Congress of Parents and Teachers
3501 Glenwood Avenue
Raleigh, NC, 27612-4934
http://www.ncpta.org
Parent Training and Information Center (PTI)
ECAC – Exceptional Children’s Assistance Center
907 Barra Row, Suite 102/103
Davidson, NC, 28036
http://www.ECAC-parentcenter.org
Family Support Network of North Carolina
Central Directory of Resources, CB #7340
http://www.fsnnc.org/findlocal

Protection & Advocacy
Disability Rights North Carolina
3724 National Dr., Ste 100,
Raleigh, NC 27612
http://disabilityrightsnc.org/

Relay Services
(800) 735-8262 (V)
(800) 735-2962 (TTY); 711 (TTY)
(877) 735-8261 (Speech to Speech)

Special Education
Exceptional Children Division
Department of Public Instruction
6356 Mail Service Center
Raleigh, NC, 27699-6356
http://www.ncpublicschools.org/ec

Special Format Library
North Carolina Library for the Blind and Physically Handicapped
State Library of North Carolina -Department of Cultural Resources
1811 Capital Boulevard
Raleigh, NC, 27635
http://statelibrary.ncdcr.gov/lbph

Special Health Care Needs
Children and Youth Branch
Women’s and Children’s Health Section
Division of Public Health
Department of Health and Human Services
1928 Mail Service Center
Raleigh, NC, 27699-1928
http://www.ncdhhs.gov
TelAbility
For medical information, telehealth and community resources for children with special needs
1101 Weaver Dairy Road, Suite 202
Chapel Hill, NC, 27514
http://www.TelAbility.org

Speech, Language, and Hearing
North Carolina Speech, Hearing and Language Association
P.O. Box 28359
Raleigh, NC, 27611-8359
http://www.ncshla.org

State Web Site
Connect with your state’s official website to find all manner of state
agencies and information, including how to contact your governor
and/or your representatives in the Senate and House:
http://www.ncgov.com/

Transition Services
Education and Transition Services
Exceptional Children Division
North Carolina Department of Public Instruction
6356 Mail Service Center
Raleigh, NC, 27699-6356
http://www.ncpublicschools.org/ec/

UCEDD
Carolina Institute for Developmental Disabilities
The University of North Carolina at Chapel Hill
Campus Box 7255
Chapel Hill, NC, 27599-7255
http://www.cidd.unc.edu/

Vocational Education and Rehabilitation
Career and Technical Education
Department of Public Instruction
6359 Mail Service Center
Raleigh, NC, 27699-6359
http://www.ncpublicschools.org
Division of Vocational Rehabilitation Services
Department of Health and Human Services
2801 Mail Service Center
Raleigh, NC, 27699-2801
http://dvr.dhhs.state.nc.us

North Dakota

Carissa Le

MN, ND, SD

I can be of assistance to others in my area by leading them to PRISMS, giving them pamphlets and other literature, and hosting get-togethers.

Email: no*********@*******ms.org

North Dakota Resources

ADA Center
Rocky Mountain ADA Center
3630 Sinton Road, Suite 103
Colorado Springs, CO, 80907
http://www.adainformation.org

Assistive Technology
North Dakota Interagency Program for Assistive Technology
3240 – 15th Street South, Suite B
Fargo, ND, 58101
400 E. Broadway Ave, Suite 501
Bismarck, ND 58501
(800) 895-4728 (either office)
http://ndipat.org/

Career and Technical Education
State Board of Career and Technical Education
15th Floor, Capitol Tower
600 E. Boulevard Avenue
Bismarck, ND, 58505-0610
http://www.nd.gov/cte
CHIP (health care for low-income uninsured children)
Healthy Steps
Department 325
600 E. Boulevard Avenue
Bismarck, ND, 58505-0250
http://www.nd.gov/dhs/services/medicalserv/index.html

D D Council
State Council on Developmental Disabilities
919 S 7th St, Suite 503
Bismarck ND 58504
http://www.nd.gov/scdd/

Developmental Disabilities
Services to Individuals with Disabilities
North Dakota Department of Human Services
600 East Boulevard Avenue, Dept 325
Bismarck N.D. 58505-0250
http://www.nd.gov/dhs/services/disabilities

Dispute Resolution
Department of Public Instruction-Special Education
600 E. Boulevard Avenue, Dept. 201
Bismarck, ND, 58505-0440
https://www.nd.gov/dpi

Early Intervention
Developmental Disabilities Division
North Dakota Department of Human Services
1237 W. Divide Avenue
Bismarck, ND, 58501
http://www.nd.gov/dhs/services/disabilities/earlyintervention

Epilepsy
Epilepsy Foundation of Minnesota
1600 University Avenue, Suite 300
St. Paul, MN, 55104
http://www.efmn.org

Independent Living
Independent Living Rehabilitation Unit
Box 254
Crosby, ND 58730
http://www.ilru.org/projects/silc-net/silc-directory-results/ND
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc of Bismarck
921 South 9th St, Ste 108
Bismarck, ND 58504
https://thearcofbismarck.org/

Mental Health
Division of Mental Health and Substance Abuse Services
Behavioral Health Services
600 East Boulevard Avenue, Dept 325
Bismarck N.D. 58505-0250
http://www.nd.gov/dhs/services/mentalhealth
Mental Health America of North Dakota
523 N. 4th Street
P.O. Box 4106
Bismarck, ND, 58502-4106
http://www.mhand.org

Preschool, Disabilities
Office of Special Education
Department of Public Instruction
600 E. Boulevard Avenue, Department 201
Bismarck, ND, 58505-0440
https://www.nd.gov/dpi

Protection & Advocacy
North Dakota Protection & Advocacy Project
400 E. Boulevard Ave, Suite 409
Bismarck, ND, 58501
http://www.ndpanda.org

Relay Services
(800) 366-6889 (V)
(800) 366-6888 (TTY); 711 (TTY)
(877) 366-3709 (Speech to Speech)

Special Education
Office of Special Education
Department of Public Instruction
600 E. Boulevard Avenue, Department 201
Bismarck, ND, 58505-0440
https://www.nd.gov/dpi/education-programs/special-education

Special Format Library
North Dakota State Library
Talking Book Services
604 E. Boulevard Avenue, Department 250
Bismarck, ND, 58505-0800
http://www.library.nd.gov/talkingbooks.html

Special Health Care Needs
Children’s Special Health Services
Department of Human Services
State Capitol
600 E. Boulevard Avenue, Department 325
Bismarck, ND, 58505-0269
http://www.nd.gov/dhs

Speech, Language, and Hearing
North Dakota Speech-Language-Hearing Association
800 12th Ave NE, Apt 212
Jamestown, ND 58401
https://www.ndslha.org/

State Web Site
Connect with your state’s official website to find all manner of state agencies and
information, including how to contact your governor and/or your representatives in
the Senate and House:
http://www.nd.gov

Transition Services
Office of Special Education
North Dakota Department of Public Instruction
600 E. Boulevard Avenue
Bismarck, ND, 58505-0440
https://www.nd.gov/dpi/education-programs/special-education

UCEDD
North Dakota Center for Persons with Disabilities
Minot State University
500 University Avenue West
Minot, ND, 58707
http://www.ndcpd.org

Vocational Rehabilitation
Vocational Rehabilitation Division
North Dakota Department of Human Services
1237 W. Divide Avenue, Suite 1B
Bismarck, ND, 58501
http://www.nd.gov/dhs/dvr

Organizations for Parents
Parent Training and Information Center (PTI)
Pathfinder Parent Center
7 3rd St SE #101
Minot, ND 58701
http://www.pathfinder-nd.org
Family to Family Support Network
University of North Dakota School of Medicine and Health Sciences
Center for Rural Health
1301 N. Columbia Road, Stop 9037
Grand Forks, ND 58202-9037
https://ruralhealth.und.edu
Partners in Policymaking
The Arc of Bismarck
921 South 9th St, Ste 108
Bismarck, ND 58504
(701) 222-1854
Ex****************@**************ck.org
http://www.thearcofbismarck.org/partners

Other Organizations
Easter Seals Goodwill of North Dakota, Inc.
3333 7th Ave N
Fargo, ND 58102
http://www.esgwnd.org

Ohio

Mary Hards

OH, WV

My name is Mary Hards. I have been a member of PRISMS for the past 8 years. I found out that my son had Smith Magenis Syndrome when he was 4 years old. Then after he was diagnosed, we learned about the organization, PRISMS. Within a few months, we went to a conference and learned so many things we didn’t know. We were so overwhelmed with the friendliness of all the families. I wanted to be part of this great group and help spread awareness of my sons syndrome. My hope of being a representative is to help other families feel as welcome to be part of our PRISMS family as I did. My SMSer has been a lot of hard work. He has had lots of behavior and medical problems. The one thing about being in a group like this is that you can always find someone to understand what you are going through.

Email: oh**@*******ms.org

Ohio Resources

Assistive Technology
Assistive Technology of Ohio
Area 1700, 1314 Kinnear Rd.
Columbus, OH 43212
(614) 292-2390/(800) 784-3425
at****@*su.edu
https://atohio.engineering.osu.edu/

CHIP
(health care for low-income uninsured children)
Healthy Start Healthy Families
(800) 324-8680
https://www.benefits.gov/benefits/benefit-details/1610

D D Council
Ohio Developmental Disabilities Council
899 E. Broad St, Ste 203
Columbus, OH 43205
http://www.ddc.ohio.gov

Developmental Disabilities
Ohio Department of Developmental Disabilities
30 E. Broad St.
Columbus, OH, 43215
(800) 617-6733
http://dodd.ohio.gov/Pages/default.aspx

Early Intervention
Help Me Grow
246 N. High St., 5th Floor
Columbus, OH, 43215
HM*@******io.gov
http://www.helpmegrow.ohio.gov/

Epilepsy
Epilepsy Association
2831 Prospect Avenue
Cleveland, OH, 44115
http://www.epilepsyinfo.org

Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact: Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/OH
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc of Ohio
1335 Dublin Road, Suite 100-A
Columbus, OH, 43215
http://www.thearcofohio.org

Mediation
Office for Exceptional Children
Ohio Department of Education
25 S. Front Street, 2nd Floor
Columbus, OH, 43215
http://education.ohio.gov/Topics/Special-Education/Mediation-Complaints-and-Due-Process

Mental Health
Ohio Department of Mental Health
The James A Rhodes State Office Tower
30 E. Broad Street, 8th Floor
Columbus, OH, 43215-3430
(614) 466-2596/(877) 275-6364
http://mha.ohio.gov/
NAMI Ohio
747 E. Broad Street
Columbus, OH, 43205
http://www.namiohio.org

Mental Health – Youth
Office of Children’s Services and Prevention
Ohio Department of Mental Health
30 E. Broad Street, 8th Floor
Columbus, OH, 43215-3430
http://mha.ohio.gov/Default.aspx?tabid=313

Parent Organizations
Parent Teacher Association (PTA)
Ohio Congress of Parents and Teachers
40 Northwoods Boulevard
Columbus, OH, 43235
http://www.ohiopta.org
Parent Training and Information Center (PTI)
Ohio Coalition for the Education of Children with Disabilities
165 W. Center Street, Suite 302
Marion, OH, 43302-3741
http://www.ocecd.org

Preschool, Disabilities
Office of Early Learning and School Readiness
Ohio Department of Education
25 S. Front Street, Mail Stop 305
Columbus, OH, 43215-4183
education.ohio.gov/Topics/Early-Learning

Protection & Advocacy
Disability Rights Ohio
50 W. Broad St., Suite 1400
Columbus, OH, 43215-5923
http://www.disabilityrightsohio.org

Relay Services
(800) 750-0750 (V)
(216) 476-6001 (V/TTY); 711 (TTY)
(877) 750-9097 (Speech to Speech)

Special Education
Office for Exceptional Children
Ohio Department of Education
25 S. Front Street
Columbus, OH, 43215
http://education.ohio.gov/Topics/Special-Education

Special Format Library
The Public Library of Cincinnati and Hamilton County
Library for the Blind and Physically Handicapped
17121 Lakeshore Blvd
Cleveland, OH 44110
http://www.cincinnatilibrary.org/services/blind.html

Special Health Care Needs
Bureau for Children with Medical Handicaps
Ohio Department of Health
246 N. High Street
P.O. Box 1603
Columbus, OH, 43215-1603
(614) 466-1700
(800) 755-4769
BC**@******io.gov
https://odh.ohio.gov/wps/portal/gov/odh/know-our-programs/children-with-medical-handicaps/welcome-to

Speech, Language, and Hearing
Ohio Speech-Language-Hearing Association
P.O. Box 309
Germantown, OH, 45327
http://www.ohioslha.org

Transition Services
Office for Exceptional Children
Ohio Department of Education
25 S. Front Street, Mail Stop 205
Columbus, OH, 43215
http://www.ode.state.oh.us

UCEDD
University of Cincinnati University Center for Excellence in Developmental Disabilities
Cincinnati Children’s Hospital Medical Center Division of Developmental and Behavioral Pediatrics
Mailing Address:
MLC 4002, 3333 Burnet Avenue
Cincinnati, OH, 45229-3039
https://www.ucucedd.org
Nisonger Center – UCEDD
The Ohio State University
McCampbell Hall
1581 Dodd Drive
Columbus, OH, 43210
https://nisonger.osu.edu/

Vocational Education and Rehabilitation
Ohio Department of Education
Office for Exceptional Children
25 S. Front Street, Mail Stop 204
Columbus, OH, 43215-4183
http://education.ohio.gov/Topics/Career-Tech
Rehabilitation Services Commission
400 E. Campus View Boulevard, SW3
Columbus, OH, 43235-4604
http://www.ood.ohio.gov/Core-Services/BVR

Other Organizations
Easter Seals Northern Ohio
41641 N. Ridge Road, Suite D
Elyria, OH 44035
http://www.noh.easterseals.com
Easter Seals Central and Southeast Ohio
565 Children’s Drive West
3830 Trueman Court
Hilliard, OH 43026
http://www.eastersealscentralohio.org
Ohio Family and Children First
30 E. Broad St, 8th floor
Columbus, OH 43215
http://www.fcf.ohio.gov/
VSA Ohio
77 S. High Street, 2nd Floor
Columbus, OH, 43215
http://www.vsao.org

Oklahoma

Bernadette Huston

MO, OK

As your regional representative, I will do my best to provide you with helpful resources and create a support group to help families know that they are not alone.

Email: ok******@*******ms.org

Oklahoma Resources

ADA CenterOklahoma Southwest ADA Center
2323 S. Shepherd, #1000
Houston, TX, 77019
http://www.southwestada.org
Assistive TechnologyOklahoma ABLE Tech
Oklahoma State University, Seretean Wellness Center
1514 W. Hall of Fame
Stillwater, OK, 74078-2026
(800) 257-1705
ab******@*****te.edu
https://www.okabletech.org
Oklahoma Lee Mitchener Tolbert Center for Developmental Disabilities
University of Oklahoma Health Sciences Center
801 NE 13th Street, CHB-235
Oklahoma City, OK, 73104
http://alliedhealth.ouhsc.edu/Departments/RehabilitationSciences/CenterofExcellence/LeeMitchenerTolbertCenter.aspx
Career & Technical EducationOklahoma Department of Career and Technology Education
1500 W. 7th Avenue
Stillwater, OK, 74074-4364
http://okcareertech.org
D D CouncilOklahoma Developmental Disabilities Council
2401 N.W. 23rd Street, Suite 74
Oklahoma City, OK, 73107
http://www.okddc.ok.gov
Developmental DisabilitiesDevelopmental Disabilities Services Department of Human Services
Sequoyah Memorial Office Building
2400 N. Lincoln Blvd., Oklahoma City, OK 73105
PO Box 25352, Oklahoma City, OK 73125-0352
http://www.okdhs.org/services/dd/Pages/default.aspx
Early InterventionSoonerStart Special Education Services
Oklahoma State Department of Education
_2500 N. Lincoln Boulevard, Suite 510
Oklahoma City, OK, 73105-4599_http://sde.ok.gov/sde/soonerstart

Epilepsy
Epilepsy Association of Oklahoma
11212 N. May Ave. Suite 108
Oklahoma City, OK. 73120
http://www.okepilepsy.org
Healthcarehttps://www.healthinsurance.org/oklahoma-state-health-insurance-exchange/
Independent LivingP.O. Box 3574
McAlester, OK 74502
http://www.ilru.org/projects/silc-net/silc-directory-results/OK
To find out the contact information for centers for independent living (CILs) in your state, contact: National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org
Intellectual & Developmental DisabilitiesTARC
2516 East 71st St., Suite A
Tulsa, OK, 74136-5531
http://www.ddadvocacy.net
MediationSpecial Education resolution Center
Oklahoma State University
4825 S Peoria, Suite 2
Tulsa, OK, 74105
(918) 712-9632
(888) 267-0028
http://sde.ok.gov/sde/faqs/special-education-mediation
Mental HealthDepartment of Mental Health and Substance Abuse Services
1200 NE 13th Street, Oklahoma City, OK 73117
P .O. Box 53277, Oklahoma City, OK, 73152-3277
http://www.odmhsas.org
Mental Health Association of Central Oklahoma
2800 NW 36th Street, Suite 104
Oklahoma City, OK, 73112
http://www.okrehab.org/guide/mental-health-association-central-oklahoma-oklahoma-county
NAMI Oklahoma
3037 NW 63rd, Suite 104W
Oklahoma City, OK 73116
(800) 583-1264 (in OK)
http://www.namioklahoma.org
Parent OrganizationsOklahoma Family Network
800 NE 15th Street, Suite 51
PO Box 21072 Oklahoma City, OK, 73156-1072
http://www.oklahomafamilynetwork.org
Oklahoma Family Support 360° Project Center for Learning and Leadership/UCEDD University of Oklahoma Health Sciences Center
College of Medicine
P .O. Box 26901, ROB 342
Oklahoma City, OK, 73126-0901
http://www.ouhsc.edu/thecenter/projects/serviceand demonstrationprojects/oklahomafamilysupport360
Oklahoma Congress of Parents and Teachers, Inc.
2801 N. Lincoln Boulevard, Suite 214
Oklahoma City, OK, 73105
http://www.okpta.org
Oklahoma Parents Center
233 N. Broadway
P .O. Box 512
Holdenville, OK, 74848
http://www.oklahomaparentscenter.org
P2P at Oklahoma Family Network
800 NE 15th Street, Suite 51
PO Box 21072
Oklahoma City, OK, 73156-1072
http://www.oklahomafamilynetwork.org
Sooner SUCCESS
University of Oklahoma Health Sciences Center
940 N.E. 13th Street, Suite 4900
Oklahoma City, OK, 73104
http://soonersuccess.ouhsc.edu
Protection & AdvocacyOklahoma Disability Law Center, Inc.
2915 Classen Blvd., 300 Cameron Bldg
Oklahoma City, OK, 73106
2828 E 51 St., Suite 302
Tulsa, OK 74105
(800) 226-5883
http://www.okdlc.org/
Relay Services(800) 522-8506 (V/TTY)
(800) 722-0353 (V/TTY); 711 (TTY)
(877) 722-3515 (Speech to Speech)
Special EducationSpecial Education Services Department of Education
2500 N. Lincoln Boulevard, Suite 412
Oklahoma City, OK, 73105-4599
http://www.ok.gov/sde/
Special Format LibraryOklahoma Library for the Blind and Physically Handicapped
Department of Rehabilitation Services
300 N.E. 18th Street
Oklahoma City, OK, 73105
http://www.library.state.ok.us
Special Health Care NeedsAdult and Family Services
Department of Human Services
2400 N. Lincoln Blvd
P .O. Box 25352
Oklahoma City, OK, 73125
http://www.okdhs.org/Pages/default.aspx
Family Voices of Oklahoma, at Oklahoma Family Network
800 NE 15TH Street, Suite 316, Oklahoma City, OK 73104
PO Box 21072 , Oklahoma City, OK, 73156-1072
http://www.oklahomafamilynetwork.org
Speech, Language, and HearingOklahoma Speech-Language-Hearing Association
3126 S. Boulevard St. #180
Edmond, OK 73013
http://www.oslha.org
State Web SiteConnect with your state’s official website to find all manner of state agencies and information, including how to contact your governor and/or your representatives in the Senate and House:
http://www.ok.gov
UCEDDCenter for Interdisciplinary Learning and Leadership
University of Oklahoma Health Sciences Center
College of Medicine
800 N.E. 15th Street, Oklahoma City, OK 73104-4614
P .O. Box 26901, ROB 342, Oklahoma City, OK, 73190-3042
http://www.ouhsc.edu/thecenter
Vocational RehabilitationDepartment of Rehabilitation Services
3535 N.W. 58th, Suite 500
Oklahoma City, OK, 73112
http://www.okrehab.org/job-seekers/dvr
Other OrganizationsEaster Seals Oklahoma
701 N.E. 13th Street
Oklahoma City, OK, 73104
http://www.eastersealsoklahoma.org
J.D. McCarty Center for Children with Developmental Disabilities
2002 E. Robinson Street
Norman, OK, 73071
http://www.jdmc.org
Oklahoma Office of Disability Concerns
2401 N.W. 23rd, Suite 90
Oklahoma City, OK, 73107
http://www.ohc.state.ok.us/

Oregon

No Regional Representative Currently Assigned

There is currently no regional representative for this area. If you have a question or would like to get connected, please email or****@*******ms.org. This inbox is monitored by a broader distribution group who will do their best to find someone who can help.

Oregon Resources

ADA Center
Northwest ADA Center
Center for Continuing Education in Rehabilitation
University of Washington
www.nwadacenter.org

Assistive Technology
Access Technologies, Inc.
www.accesstechnologiesinc.org

Autism
Autism Society of Oregon
autismsocietyoregon.org

CHIP
(health care for low-income uninsured children)
Oregon SCHIP
Division of Medical Assistance Programs
Administrative Office
www.oregon.gov/oha/healthplan/pages/app_benefits/schip.aspx

D D Council
Oregon Council on Developmental Disabilities
www.ocdd.org

Early Intervention & Preschool, Disabilities
Early Intervention/Early Childhood Special
Education Department
Office of Special Education
Department of Education
www.ode.state.or.us

Epilepsy
Epilepsy Foundation of Northwest
www.epilepsy.com/local/oregon

Independent Living
To find out the contact information for the Statewide
Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/OR
To find out the contact information for centers for
independent living (CILs) in your state, contact:
National Council on Independent Living
www.ncil.org

Intellectual & Developmental Disabilities
The Arc of Oregon
www.arcoregon.org

Mediation
Office of Student Learning and Partnerships
Department of Education
www.ode.state.or.us

Mental Health
Mental Health Association of Oregon (MHAO)
www.mhaoforegon.org
NAMI Oregon
www.nami.org/oregon
Oregon Family Support Network, Inc.
www.ofsn.org
Oregon Health – Family Mental Health
egov.oregon.gov/dhs/mentalhealth

Parent Organizations
Parent Teacher Association (PTA) – Oregon PTA
www.oregonpta.org
Parent Training and Information Center (PTI)
Family and Community Together (FACT)
factoregon.org

Protection & Advocacy
Disability Rights Oregon
www.disabilityrightsoregon.org

Relay Services
(800) 735-1232 (V)
(800) 735-3250 (VCO)
(800) 735-2900 (TTY); 711 (TTY)
(800) 735-0644 (ASCII)

Special Education
Office of Student Learning and Partnerships
Department of Education
www.ode.state.or.us

Special Format Library
Oregon State Library
Talking Book and Braille Services
250 Winter Street NE
Salem, OR, 97301-3950
www.oregon.gov/library/Pages/default.aspx

Special Health Care Needs
Child Development and Rehabilitation Center
Oregon Health & Science University
www.ohsu.edu/doernbecher/child-development-and-rehabilitation-center

Speech, Language, and Hearing
The Oregon Speech-Language and Hearing Association
www.oregonspeechandhearing.org

State Web Site
Connect with your state’s official website to find all manner of state agencies and
information, including how to contact your governor and/or your representatives in
the Senate and House:
www.oregon.gov

Transition Services
Secondary Transition Services
Oregon Department of Education
www.ode.state.or.us

UCEDD
University of Oregon UCEDD
College of Education
education.uoregon.edu/community-outreach-and-services
Oregon Health & Science University UCEDD
www.ohsuidd.org
Other OrganizationsEaster Seals Oregon
www.or.easterseals.com

Pennsylvania

Sasha Piastro-Tedford

My name is Sasha Piastro-Tedford and I am one of the PRISMS Regional Representatives for Pennsylvania. My husband and I live in western PA with our SMS-er, Jonah, his two younger sisters and our goldendoodle. We found out about PRISMS after our son was diagnosed with SMS in 2020 at the age of nine. Jonah’s doctors immediately referred us to the PRISMS website and we were amazed by the wealth of information and resources available. We have greatly appreciated having a such a valuable resource to turn to at each stage of our SMS journey. Jonah’s initial diagnosis was overwhelming, and we have definitely felt isolated and discouraged. Parenting Jonah has been both a challenge and a blessing. He has brought such joy to our lives, showing us what true and uninhibited friendliness looks like, and teaching us to slow down and notice the small wonders in the world. I’m excited to be a Regional Representative because I want to connect with other SMS families and build this community, while also spreading awareness of this rare syndrome. Please feel free to reach out to me with any questions and concerns. I’m happy to listen and support you in any way that I can!

Email: pe**********@*******ms.org

Pennsylvania SMS Clinic

Lewisburg

Geisinger SMS Clinic

Geisinger-Bucknell Autism & Developmental Medicine Institute
Ages seen: Children and Adults
Clinic Director: Barbara Haas-Givler, MEd, BCBA
Medical Director: Thomas Challman, MD
Clinic Coordinator: Madeline Williamson, MS, CGC
Email: ml**********@*******er.edu
Phone: 570-214-1916
Web: https://www.geisingeradmi.org/

Pennsylvania Resources

ADA Center
Mid-Atlantic ADA Center
401 North Washington Street, Suite 450
Rockville, MD, 20805
http://www.adainfo.org

Assistive Technology
Pennsylvania’s Initiative on Assistive Technology
Institute on Disabilities
1755 N. 13th Street
Student Center, Room 411S
Philadelphia, PA, 19122
http://disabilities.temple.edu/programs/assistive/piat/

CHIP
(health care for low-income uninsured children)
Pennsylvania’s Children’s Health Insurance Program
http://www.chipcoverspakids.com/

D D Council
Developmental Disabilities Council
561 Forum Building, Commonwealth Avenue
Harrisburg, PA, 17120
http://www.paddc.org

Developmental Disabilities
Pennsylvania Department of Human Services
P.O. Box 2675
Harrisburg, PA, 17105-2675
http://www.dhs.pa.gov/learnaboutdhs/dhsorganization/officeofdevelopmentalprograms/

Early Intervention
Pennsylvania Department of Human Services
P.O. Box 2675
Harrisburg, PA, 17105-2675
http://www.dhs.pa.gov/citizens/earlyinterventionservices/

Epilepsy
Epilepsy Foundation Western/Central Pennsylvania
Locations in Pittsburgh, Harrisburg and Johnstown – http://www.efwp.org/contact/Contact.xml
http://www.efwp.org
Epilepsy Foundation of Eastern Pennsylvania
919 Walnut Street, Suite 700
Philadelphia, PA, 19107-5237
http://www.efepa.org

Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/PA
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc of Pennsylvania
101 S. Second Street, Suite 403, Executive House
Harrisburg, PA, 17101
http://www.thearcpa.org

Mediation
Office for Dispute Resolution
6340 Flank Drive, Suite 600
Harrisburg, PA, 17112
(717) 541-4960
http://odr-pa.org

Mental Health
Pennsylvania Department of Human Services
P.O. Box 2675
Harrisburg, PA, 17105-2675
http://www.dhs.pa.gov/citizens/mentalhealthservices/
NAMI Keystone Pennsylvania
105 Braunlich Drive, Suite 200
Pittsburgh, PA 15237
Phone: 412.366.3788
Toll Free: 1.888.264.7972
www.namikeystonepa.org
Family & Youth Support & Advocacy Division
1211 Chestnut St., Suite 1100
Philadelphia, PA, 19107
(215) 751-1800
(800) 688-4226
Check website for local offices
http://www.mhasp.org/family-youth

Mental Health – Youth
Pennsylvania Department of Human Services
P.O. Box 2675
Harrisburg, PA, 17105
(717) 705-8289
http://www.dhs.pa.gov/learnaboutdhs/dhsorganization/officeofmentalhealthandsubstanceabuseservices/bureauofchildrensbehavioralhealthservices/index.htm

Parent Organizations
Community Parent Resource Center
(Serving American Street Empowerment Zone and providing intense training sessions to parents of children with disabilities in Philadelphia)
Hispanos Unidos para Ninos Excepcionales
(Philadelphia HUNE, Inc.)
2215 N. American St,
Philadelphia, PA 19133
http://huneinc.org
Parent Teacher Association (PTA)
Pennsylvania Congress of Parents and Teachers, Inc.
4804 Derry Street
Harrisburg, PA, 17111
http://www.papta.org
Parent to Parent of Pennsylvania
6340 Flank Drive, Suite 600
Harrisburg, PA, 17112-2764
http://www.parenttoparent.org
Partners in Policymaking
Institute on Disabilities/University Center for Excellence
Temple University
University Services Building, Room 610
1601 N. Broad Street
Philadelphia, PA, 19122
http://disabilities.temple.edu

Preschool, Disabilities
Bureau of Early Intervention Services
Office of Child Development and Early Learning
Department of Education and Public Welfare
333 Market Street, 7th Floor, PDE Building
Harrisburg, PA, 17126-0333
http://www.pde.state.pa.us

Protection & Advocacy
Disability Rights Network of Pennsylvania
1414 N. Cameron Street, Suite C
Harrisburg, PA, 17103
http://www.drnpa.org

Relay Services
(800) 654-5988 (V)
(800) 654-5984 (TTY); 711 (TTY)
(800) 229-5746 (Speech to Speech – English)
(866) 260-9470 (Speech to Speech – Spanish)

Special Education
Bureau of Special Education
Department of Education
333 Market Street, 7th Floor
Harrisburg, PA, 17126-0333
Special Education Consultline: (800) 879-2301(V/TTY)
http://www.pde.state.pa.us
The Camphill School
1784 Fairview Rd
Glenmoore, PA 19343
610-469-9236
http://camphillschool.org

Special Health Care Needs
Division of Community Systems Development and Outreach
Division of Child and Adult Health Services
Department of Health, 7th Floor, East Wing
Health & Welfare Building
7th & Forster Street
Harrisburg, PA, 17120
http://www.state.pa.us
PA Special Kids Network
http://www.gotoskn.state.pa.us/portal/server.pt/community/special_kids_network/14205

Transition Services
Pennsylvania Training and Technical Assistance Network (PATTAN)
3190 William Pitt Way
Pittsburgh, PA, 15238
http://www.pattan.net
The Camphill School
551 W Seven Stars Rd
Phoenixville, PA 19460
610-469-9236
http://camphillschool.org

UCEDD
Institute on Disabilities/ UCEDD
Temple University
1755 N 13th Street, Suite 411
Howard Gittis Student Center, South
Philadelphia, PA, 19122
http://disabilities.temple.edu
Other OrganizationsEaster Seals of Western and Central Pennyslvania
2525 Railroad St
Pittsburgh, PA 15222 (888) 372-7280
http://www.easterseals.com/wcpenna/
Easter Seals of Southeastern Pennsylvania
3975 Conshohocken Avenue
Philadelphia, PA, 19131
http://www.easterseals-sepa.org
Pennsylvania Parents and Caregivers Resource Network
P.O. Box 4336
Harrisburg, PA, 17111-0336
http://www.ppcrn.org

Rhode Island

Leah Baigell

CT, RI, MA, VT, NH, ME

Email: rh*********@*******ms.org

Rhode Island Resources

ADA Center
New England ADA Center
180-200 Portland Street, Suite 1
Boston, MA, 02114
http://www.newenglandada.org

Assistive Technology
Rhode Island Assistive Technology Access Partnership
Office of Rehabilitation Services
40 Fountain Street
Providence, RI, 02903-1898
http://www.atap.ri.gov
CHIP (health care for low-income uninsured children)
HealthSourceRI
https://healthyrhode.ri.gov/HIXWebI3/DisplayRIServices

D D Council
Rhode Island Developmental Disabilities Council
400 Bald Hill Road, Suite 515
Warwick, RI, 02886
http://www.riddc.org

Developmental Disabilities
Department of Behavioral Health, Developmental Disabilities and Hospitals
14 Harrington Road, Barry Hall
Cranston, RI, 02920
http://www.bhddh.ri.gov/

Early Intervention
Department of Children, Youth & Families
101 Friendship St.
Providence, RI 02903
(401) 528-3502
http://www.eohhs.ri.gov

Epilepsy
Epilepsy Foundation Massachusetts, Rhode Island, New Hampshire & Maine
540 Gallivan Blvd, 2nd Floor
Boston, MA, 02124
http://www.epilepsynewengland.org

Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/RI
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org

Intellectual & Developmental Disabilities
Arc of Blackstone Valley
500 Prospect St.
Wing B, Suite 203
Pawtucket, RI 02860
http://www.bvcriarc.org/

Mediation
Rhode Island Department of Elementary and Secondary Education
255 Westminster Street, Shepard Building
Providence, RI, 02903
http://www.ride.ri.gov/StudentsFamilies/SpecialEducation/WhenSchoolsandFamiliesDoNotAgree.aspx

Mental Health
Mental Health Association of Rhode Island
345 Blackstone Boulevard
Providence, RI 02906
http://www.mhari.org
Department of Behavioral Healthcare, Developmental Disabilities and Hospitals
14 Harrington Road
Cranston, RI, 02920
http://www.bhddh.ri.gov/mh/index.php
Mental Health – Children
Department of Children, Youth and Families
255 Westminster Street
Providence, RI, 02903
(401) 528-3756
http://www.dcyf.ri.gov

Parent Organizations
Parent Training and Information Center (PTI)
1210 Pontiac Avenue
Cranston, RI, 02920
http://www.startingpointsforriparents.org
Parent Support Network of Rhode Island
535 Centerville Rd #202
Warwick, RI 02886
http://www.psnri.org
Family to Family of Rhode Island
(401) 456-4732
(401) 270-0101
(800) 464-3399 Ext. 139
https://namirhodeisland.org/family-to-family/

Preschool, Disabilities
Early Childhood Special Education
Rhode Island Department of Education
255 Westminster Street
Providence, RI, 02903
http://www.ride.ri.gov

Protection & Advocacy
Rhode Island Disability Law Center. Inc.
275 Westminster St., Suite 401
Providence, RI, 02903- 3434
http://www.ridlc.org

Relay Services
(800) 745-6575 (V)
(800) 745-5555 (TTY); 711 (TTY)
(800) 745-1570 (ASCII), (866) 355-9213 (Speech to Speech)
(866) 355-9214 (Spanish)

Special Education
Rhode Island Department of Education
255 Westminster Street
Providence, RI, 02903-3400
http://www.ride.ri.gov/StudentsFamilies/SpecialEducation.aspx

Special Format Library
Talking Books Plus
Office of Library and Information Services
One Capitol Hill
Providence, RI, 02908
http://www.olis.ri.gov/tbp/

Special Health Care Needs
Office of Special Needs
Rhode Island Department of Health
3 Capitol Hill, Room 302
Providence, RI, 02908-5097
http://www.health.ri.gov/programs/detail.php?pgm_id=105
RI Parent Information Network
1210 Pontiac Ave.
Cranston, RI, 02920
http://ripin.org/

Speech, Language, and Hearing
Rhode Island Speech-Language-Hearing Association
P.O. Box 9241
Providence, RI, 02940
http://www.risha.info

Transition Services
Rhode Island Department of Education
255 Westminister Street
Providence, RI, 02903-3400
http://www.ride.ri.gov/StudentsFamilies/SpecialEducation/SpecialEducationProgramming.aspx

UCEDD
The Paul V. Sherlock Center on Disabilities
Rhode Island College
600 Mount Pleasant Avenue
Providence, RI, 02908
http://www.sherlockcenter.org

Vocational Rehabilitation
Office of Rehabilitation Services
Department of Human Services
40 Fountain Street
Providence, RI, 02903
http://www.ors.ri.gov/VR.html
NAMI Rhode Island
154 Waterman Street, Suite 5B
Providence, RI, 02906
http://www.namirhodeisland.org

Other Organizations
Governor’s Commission on Disabilities
John O. Pastore Center
41 Cherry Dale Court
Cranston, RI, 02920
http://www.disabilities.ri.gov
Advocates in Action
662 Hartford Ave
Providence, RI, 02909
(877) 532-5543
ai**@***************on.org
http://www.advocatesinaction.org
VSA arts of Rhode Island
500 Prospect Street
Pawtucket, RI, 02860
http://www.vsartsri.org

South Carolina

Rhonda Franklin

I am the proud parent of James Evan Franklin. Evan was born on November 2, 1982. His diagnosis of Smith-Magenis Syndrome did not occur until January of 1990 at the age of 7. Before that time, he had been diagnosed as learning disabled with ADHD. But we knew there was more to it than that. It was a relief to ﬁnally have a diagnosis but still very little was known at that time. My husband, John, and I joined PRISMS in 1993. It was a blessing to learn from others who were experiencing the same struggles with their children as we were. The information they provided helped us to educate those in the school system who needed to understand Evan. We attended the ﬁrst National SMS Conference in March of 1997. As a representative for the state of SC, I hope to share my knowledge and experience with other parents of SMS children and adults as they navigate through their journey. I plan to provide guidance and support as we discuss their situations and ultimately lead them to the available resources, contacts, etc. that can offer some resolution. It is also my intent to collaborate with other regional representatives to plan events so that families can connect face to face. I have attached a picture of Evan and myself. This is the most recent we have of the two of us together. He tends to not like to have his picture made… unless it’s with any type of character in costume!!

Email: so***********@*******ms.org

South Carolina Resources

ADA Center
Southeast ADA Center
1419 Mayson Street NE
Atlanta, GA, 30324
http://www.adasoutheast.org

Assistive Technology
South Carolina Assistive Technology Program
8301 Farrow Rd
Columbia, SC 29203
http://www.sc.edu/scatp

Career & Technical Education
Office of Career and Technology Education
South Carolina Department of Education
1429 Senate Street, Room 912A
Columbia, SC, 29201
http://www.ed.sc.gov

CHIP
(health care for low-income uninsured children)
Partners for Healthy Children
P.O. Box 100101
Columbia, SC, 29202
www.scdhhs.gov/eligibility-groups/partners-healthy-children-phc

D D Council
Developmental Disabilities Council
Office of the Governor
Edgar A. Brown Building
1205 Pendleton Street, Suite 453
Columbia, SC, 29201
http://www.scddc.state.sc.us

Early Intervention
South Carolina First Steps/BabyNet
PO Box 8206
Columbia, SC 29202
in**@****hs.gov
https://www.scdhhs.gov/resource/babynet

Epilepsy
South Carolina Advocates for Epilepsy
PO Box 943
Goose Creek, SC 29445
(843) 991-7144
ka****@********sy.org
https://www.scepilepsy.org/

Independent Living
Able South Carolina
Offices in Greenville and Columbia
http://www.able-sc.org
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/SC

Intellectual & Developmental Disabilities
The Arc of South Carolina
1202 12th Street
Cayce, SC 29033
http://www.arcsc.org

Mediation
Deputy General Counsel
Office of General Counsel
South Carolina Department of Education
1429 Senate Street, Room 1015
Columbia, SC, 29201
http://www.ed.sc.gov

Mental Health
Department of Mental Health
P. O. Box 485
Columbia, SC, 29202
https://scdmh.net/
Federation of Families of South Carolina
810 Dutch Square Blvd., Suite 205
Columbia, SC, 29210
http://www.fedfamsc.org
Mental Health Association in South Carolina
1823 Gadsden Street
Columbia, SC, 29201
http://www.mha-sc.org
NAMI of South Carolina
P.O. Box 1267
Columbia, SC, 29202
http://www.namisc.org

Mental Health – Youth
Division of Children, Adolescents and Their Families
Department of Mental Health
2414 Bull Street, Room 304
Columbia, SC, 29202
https://scdmh.net/dmh-components/1497-2/child-adolescent-and-family-services-caf/

Parent Organizations
Community Parent Resource Center
Family Resource Center for Disabilities and Special Needs, Inc.
1575 Savannah Highway, Suite 6
Charleston, SC, 29407
http://www.frcdsn.org
Parent Teacher Association (PTA)
South Carolina Congress of Parents and Teachers
1826 Henderson Street
Columbia, SC, 29201-2619
http://www.scpta.org

Protection & Advocacy
Protection & Advocacy for People with Disabilities, Inc.
3710 Landmark Drive, Suite 208
Columbia, SC, 29204
http://www.pandasc.org

Relay Services
(800) 735-2905 (V)
(800) 735-7293 (ASCII); 711 (TTY)
(877) 735-7277 (Speech to Speech)
(800) 735-8583 (SC Relay)

Speech, Language, and Hearing
South Carolina Speech-Language-Hearing Association
PO Box 1782
Columbia, SC 29202
(803) 764-5041
mm*****@***********es.com
http://www.scsha.net/

Special Education
South Carolina Department of Education
Office of Exceptional Children
1429 Senate Street, Room 808
Columbia, SC, 29201
https://ed.sc.gov/districts-schools/special-education-services/
Office of Exceptional Children
South Carolina Department of Education
1429 Senate Street, 8th Floor
Columbia, SC, 29201
http://www.ed.sc.gov

Special Format Library
South Carolina State Library
Talking Book Services
P.O. Box 11469
Columbia, SC, 29211
http://www.statelibrary.sc.gov

Special Health Care Needs
Services for Children with Special Health Care Needs
200 Bull St.
Columbia, SC, 29201
(803) 898-3432
http://www.scdhec.gov/Health/ChildTeenHealth/ServicesforChildrenwithSpecialHealthCareNeeds/
Dental Care
James B. Edwards College of Dental Medicine
https://muschealth.org/medical-services/dental

Transition Services
Francis Marion University
P.O. Box 100547
Columbia, SC, 29501-0547
http://ed.sc.gov/

UCEDD
Center for Disability Resources
University of South Carolina
Department of Pediatrics
School of Medicine
8301 Farrow Rd
Columbia, SC 29208
http://uscm.med.sc.edu/cdrhome

Vocational Rehabilitation
South Carolina Vocational Rehabilitation Department
1410 Boston Avenue
P.O. Box 15
West Columbia, SC, 29171-0015
http://www.scvrd.net

Other Organizations
Department of Disabilities and Special Needs
3440 Harden Street Extension
Columbia, SC, 29203
http://www.state.sc.us/ddsn
University of South Carolina, School of Medicine
Center for Disability Resources
Columbia, SC, 29208
http://uscm.med.sc.edu/cdr
Easter Seals South Carolina
PO Box 5715
Columbia, SC 29250
(803) 466-4089
http://www.easterseals.com/southcarolina/?referrer=https://www.google.com/
Family Connection of South Carolina, Inc.
2712 Middleburg Drive, Suite 103-B
Columbia, SC, 29204
http://www.familyconnectionsc.org
Access Ability
7944 Dorchester Road, Suite 5
North Charleston, SC, 29418
(843) 225-5080
In**@*******sc.org
http://www.abilitysc.org/

South Dakota

Carissa Le

MN, ND, SD

I can be of assistance to others in my area by leading them to PRISMS, giving them pamphlets and other literature, and hosting get-togethers.

Email: so*********@*******ms.org

South Dakota Resources

ADA
South Dakota Coalition of Citizens with Disabilities
221 S. Central Ave. Suite 34A
Pierre, SD 57501
(605) 945-2207/(800) 210-0143
sh*****@****cd.org
http://www.sd-ccd.org/home/services/adainformation/

Assistive Technology
South Dakota Assistive Technology Program
1161 Deadwood Ave., Suite 5
Rapid City, SD 57702
(605) 394-6742/(800) 645-0673
ds******@********nk.net****https://www.dakotalink.net/****
AutismAutism Speaks
(888) 288-4762
fa************@**********ks.org
https://www.autismspeaks.org/
CHIP(800) 305-3064
https://www.insurekidsnow.gov/coverage/sd/index.html
South Dakota department of Social Services
700 Governors Dr.
Pierre, SD 57501
(605) 773-3165
https://dss.sd.gov/medicaid/generalinfo/medicalprograms.aspx#chip

DD Council
Department of Human Services
Council on Developmental Disabilities
Pierre, SD
(605) 773-3438/(800) 265-9684
https://dhs.sd.gov/default.aspx

Developmental Disabilities
Department of Human Services
Developmental Disabilities
Pierre, SD
(605) 773-3438/(800) 265-9684
http://dhs.sd.gov/developmentaldisabilities/default.aspx

Early Intervention
South Dakota Department of Education
800 Governors Dr.
Pierre, SD 57501
(605) 773-3134
https://doe.sd.gov/birthto3/
EpilepsyEpilepsy Foundation
8301 Professional Place East, Suite 200
Landover, MD 20785-2353
(800) 322-1000
co*******@*fa.org
http://www.epilepsy.com/

Independent Living
Independent Living Research Utilization (ILRU)
(713) 520-0232
Check website for local facilities
il**@**ru.org
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/SD
National Council on Independent Living (NCIL)
(877) 525-3400
Check website for regional contact information
nc**@**il.org
http://www.ncil.org/

Intellectual & Developmental Disabilities
South Dakota Department of Human Services
Developmental Disabilities
Pierre, SD
(605) 773-3438/(800) 265-9684
http://dhs.sd.gov/developmentaldisabilities/default.aspx

Learning Disabilities
Learning Disabilities of America – South Dakota
1021 S. Courtland St.
Chamberlain, SC 57325
(605) 234-0115
ma**********@********sd.net
https://ldaamerica.org/lda-chapters/south-dakota/

Mental Health
NAMI South Dakota
1601 E. 69th St., Suite 210
Sioux Falls, SD 57108
(605) 271-1871/(800) 551-2531
Check website for regional affiliates
http://namisouthdakota.org/
South Dakota Department of Social Services
811 E. 10th, Department 9
Sioux Falls, SD 57103
(605) 367-5236
https://dss.sd.gov/behavioralhealth/

Mental Health – Youth
South Dakota Department of Social Services
700 Governors Dr.
Pierre, SD 57501
(605) 773-3123
https://dss.sd.gov/behavioralhealth/community/mentalhealth.aspx

Mediation
South Dakota Department of Education
800 Governors Dr.
Pierre, SD 57501
(605) 773-3670
http://doe.sd.gov/oess/sped/complaints.aspx

Parent Organizations
South Dakota Parent Teacher Association (PTA)
411 E. Capitol
Pierre, SD 57501-3129
(605) 224-0144
so*********@***il.com
South Dakota Parent Connection
(800) 640-4553
sd**@******nt.org
http://www.sdparent.org/web/index.php?siteid=2825
South Dakota Partners in Policymaking
221 S. Central Ave., Suite 38
Pierre, SD 57501
(605) 224-8294/(800) 658-4782
http://www.sdadvocacy.com/training/partnersinpolicymaking/

Preschool, Disabilities
South Dakota Department of Education
800 Governors Dr.
Pierre, SD 57501
(605) 773-3678
http://doe.sd.gov/oess/sped/Early-Intervention.aspx

Protection and Advocacy
South Dakota Advocacy Services
221 S. Central Ave., Suite 38
Pierre, SC 57501
(605) 224-8294/(800) 658-4782
http://www.sdadvocacy.com/

Relay Services
(877) 866-8950 or 711 (V)
(877) 787-1989 (Speech to Speech)
(800) 676-4290 (Spanish)

Special Education
South Dakota Department of Education
800 Governors Dr.
Pierre, SD 57501
(605) 773-3678
http://doe.sd.gov/sped/

Special Format Library
South Dakota State Library
MacKay Building
800 Governors Dr.
Pierre, SD 57501
(605) 773-3131/(800) 423-6665
li*****@******sd.us
http://library.sd.gov/BTB/#.WNVxX1XytxA

Speech, Language, and Hearing
South Dakota Speech-Language_Hearing Association
PO Box 308
Sioux Falls, SD 57101-0803
(605) 274-2423
http://www.sdslha.org/

State Website
Connect with your state’s official website to find all manner of state agencies and information, including how to contact your governor and/or your representatives in the Senate and House:
http://sd.gov/

Transition Services
South Dakota Department of Education
800 Governors Dr.
Pierre, SD 57101
(605) 773-3678
http://doe.sd.gov/sped/transition.aspx

UCEDD
South Dakota Center for Diabilities
Heath Science Center
1400 W. 22nd St.
Sioux Falls, SD 57105
(800) 658-3080
**@*sd.edu
http://www.usd.edu/cd

Vocational Education and Rehabilitation
South Dakota Department of Human Services
(605) 773-3438/(800) 265-9684
Check website for local offices
http://dhs.sd.gov/rehabservices/vocrehabservices.aspx

Other Organizations
Special Olympics South Dakota
800 E I-90 Lane
Sioux Falls, SD 57104
(605) 331-4117/(800) 585-2114
https://sosd.org/home.html

Tennessee

Jean Bishop

KY, TN

Email: te*******@*******ms.org

Tennessee Resources

ADA Center
Southeast ADA Center
1419 Mayson Street NE
Atlanta, GA, 30324
http://www.adasoutheast.org

CHIP
(health care for low-income uninsured children)
TennCare
(800) 318-2596
https://www.insurekidsnow.gov

D D Council
Tennessee Council on Developmental Disabilities
Davy Crockett Tower, First Floor
500 James Roberston Pkwy
Nashville, TN 37243
(615) 532-6615
tn***@**.gov
https://www.tn.gov/cdd/

Developmental Disabilities
Intellectual and Developmental Disabilities
400 Deaderick Street
Nashville, TN, 37243
(615) 532-6530
http://www.tn.gov/didd

Early Intervention
Tennessee’s Early Intervention System (TEIS)
Tennessee Department of Education
710 James Robertson Parkway, 10th Floor
Andrew Johnson Tower
Nashville, TN, 37243-0375
http://www.tn.gov/education/early-learning

Epilepsy
Epilepsy Foundation Middle and West Tennessee
95 White Bridge Road, Ste 215
Nashville, TN 37205
http://epilepsytn.org

Intellectual & Developmental Disabilities
The Arc of Tennessee
151 Athens Way, Suite 100
Nashville, TN, 37228
http://www.thearctn.org

Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/TN
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC 20036
http://www.ncil.org

Learning Disabilities
Learning Disabilities Association of America
4156 Library Road
Pittsburgh, PA, 15234-1349
http://www.ldaamerica.org/

Mediation
Division of Special Education
Department of Education
Andrew Johnson Tower
710 James Robertson Parkway, 7th floor
Nashville, TN, 37243-0380
(615) 741-5158
https://tn.gov/education/l

Mental Health
Mental Health Association of Middle Tennessee
295 Plus Park Blvd, Ste 201
Nashville, TN 37217
http://www.ichope.com
NAMI-Tennessee
1101 Kermit Drive, Suite 605
Nashville, TN, 37217
http://namitn.org
Tennessee Voices for Children
701 Bradford Avenue
Nashville, TN, 37204
http://www.tnvoices.org
Tennessee Home and Community Based Services
Department of Mental Health and Substance Abuse Services
500 Deaderick St
Nashville, TN 37243
oc*********@**.gov
http://www.tn.gov/behavioral-health/

Mental Health – Youth
Tennessee Department of Mental Health and Substance Abuse Services
500 Deaderick St
Nashville, TN 37243
oc*********@**.gov
http://www.tn.gov/behavioral-health/topic/mental-health-services-for-children-and-youth.html

Parent Organizations
Regional Intervention Program (RIP)
3411 Belmont Boulevard
Nashville, TN, 37215
http://www.ripnetwork.org
Community Parent Resource Center
Chattanooga Area Resource and Education Project
1400 McCallie Ave, Ste 112
Chattanooga, TN, 37404
http://www.lifelinefamilies.org/
Parent Teacher Association (PTA)
Tennessee Congress of Parents and Teachers, Inc.
1905 Acklen Avenue
Nashville, TN, 37212-3788
http://www.pta.org
Parent Training and Information Center (PTI)
Support and Training for Exceptional Parents, Inc. (STEP)
712 Professional Plaza
Greeneville, TN, 37745
http://www.tnstep.org

Preschool, Disabilities
Tennessee Department of Education
Division of Special Education
710 James Robertson Parkway
Nashville, TN, 37243
http://www.tn.gov/education

Protection & Advocacy
Disability Law & Advocacy Center of Tennessee
P O Box 121257
2416 21st Avenue South, Suite 100
Nashville, TN, 37212
http://www.dlactn.org

Relay Services
(866) 503-0263 (V/TTY/ASCII)

Speech, Language, and Hearing
Tennessee Association of Audiologists and Speech-Language Pathologists
http://www.taaslp.org

Special Education
Tennessee Department of Education
710 James Robertson Pkwy
Nashville, TN, 37243-0380
https://tn.gov/education/student-support/special-education

Special Format Library
Tennessee State Library and Archives
403 7th Ave. North
Nashville, TN 37243
(615) 741-2764
tl********@**.gov
http://sos.tn.gov/tsla/labm

Special Health Care Needs
Children’s Special Services
Tennessee Department of Health
710 James Robertson Parkway
Nashville, TN, 37243
tn*******@**.gov
http://www.tennessee.gov

UCEDD
Boling Center for Developmental Disabilities
University of Tennessee Health Science Center
711 Jefferson Avenue
Memphis, TN, 38105
http://www.uthsc.edu/bcdd
Vanderbilt Kennedy Center for Excellence in Developmental Disabilities
110 Magnolia Circle
Nashville, TN 37203
(615) 322-8240
http://vkc.mc.vanderbilt.edu/vkc/

Vocational Education and Rehabilitation
Division of Career and Technical Education
4th Floor, Andrew Johnson Tower
710 James Roberston Parkway
Nashville, TN, 37243-0383
https://www.tn.gov/education/career-and-technical-education.html
Division of Rehabilitation Services
Department of Human Services
400 Deaderick Street, 15th Floor
Nashville, TN, 37248-0060
http://www.tn.gov/humanservices/ds/vocational-rehabilitation.html

Other Organizations
Tennessee Disability Pathfinder (statewide bilingual disability information & referral service for all ages)
Vanderbilt Kennedy Center for Excellence in Developmental Disabilities
1114 17th Avenue South, Suite 105
Nashville, TN, 37212
http://www.familypathfinder.org
Easter Seals Tennessee
3011 Armory Dr, Ste 100
Nashville, TN 37204
http://www.eastersealstn.com
Tennessee Disability Coalition
955 Woodland Street
Nashville, TN, 37206
http://www.tndisability.org

Texas

Brenda Dickerson

Colby was born full term but at 2 weeks old I started noticing that he had some challenges. After a long ten months he was finally diagnosed with SMS. The doctor called and told me over the phone, and he said, “Do not google it, wait for the appointment with the Geneticist”. I of course googled it after crying all the way home. I stumbled on many articles that were frightening but eventually landed on the PRISMS website. I received an email from them fairly quickly and was put in touch with a local family. I will never forget meeting a then 16-year-old boy. To this day we are still in contact with the young man.

Colby has had many challenges over the last 18 years. Behavioral challenges that have come and gone at various times of his short life. Health challenges that he has overcome.

Colby is now in the vocational program at our local school district where he is training to have success at a day program and life skills.

Email: te***@*******ms.org

Texas SMS Clinic

Houston

Smith-Magenis Syndrome Clinic

Texas Children’s Hospital
Ages seen: All
Clinic Director: Rachel Franciskovich, MS, CGC
Medical Director: Lorraine Potocki, MD, FACMG
Clinic Coordinator: Rachel Franciskovich, MS, CGC
Email: sm*******@************ns.org
Phone: 832-822-2100
Web: https://www.texaschildrens.org/

Texas Resources

ADA Center
Southwest ADA Center
TIRR Memorial Hermann – ILRU
1333 Moursund
Houston, TX 77030
(713) 520-0232 (V/TTY)
(800) 949-4232 (V/TTY)
http://www.southwestada.org

Assistive Technology
Contact University Centers for Excellence in Developmental Disabilities – Center for Disability Studies.

Career & Technical Education
Texas Education Agency
1701 N. Congress Avenue
Austin, TX, 78701
(512) 463-9581
http://tea.texas.gov/cte/

CHIP – TexCare
(health care for low-income uninsured children)
Members: (866) 647-6558 Non-member: (800)990-8247
http://www.texaschildrenshealthplan.org/what-we-offer/chip/

D D Council
Texas Council for Developmental Disabilities
6201 E. Oltorf, Suite 600
Austin, TX, 78741-7509
(512) 437-5432
(800) 262-0334
http://www.txddc.state.tx.us/

Early Intervention
Dept. of Assistive & Rehabilitative Services
Division for Early Childhood Intervention Services
4800 N. Lamar Blvd.
Austin, TX, 78756
(512) 424-6754
(800) 628-5115 (Information & Referral)
https://hhs.texas.gov/services/disability/early-childhood-intervention-services

Epilepsy
Epilepsy Foundation of Texas – Houston/Dallas/Ft. Worth
(888) 548-9716
http://www.eftx.org/

Independent Living
Texas State Independent Living Council (SILC)
4319 James Casey St. Suite 100
Austin, Texas 78745
(512) 371-7353
(877) 371-7353
http://www.txsilc.org/

Intellectual & Developmental Disabilities
The Arc of Texas, Suite 100
8001 Centre Park Drive
Austin, TX, 78754
(512) 454-6694
(800) 252-9729
http://www.thearcoftexas.org/

Learning Disabilities
Learning Disabilities Association of Texas
P.O. Box 831392
Richardson, TX, 75083-1392
co*****@***tx.org
http://www.ldatx.org/

Mental Health – Youth
Children with Special Health Care Needs (CSHCN)
Services Program
Purchased Health Services Unit
Department of State Health Services
1100 W. 49th Street
Austin, TX, 78756-3179
(800) 252-8023 (Program Hotline)
(888) 963-7111
http://www.dshs.state.tx.us/cshcn/

Mental Health
Council of Families for Children
P.O. Box 14259
Austin, TX, 78714-2591
972-494-3232
http://www.counciloffamilies.org/
Mental Health America of Texas
1210 San Antonio, Suite 200
Austin, TX, 78701
(512) 454-3706
https://mentalhealthtx.org/
NAMI Texas
Austin State Hospital Campus
Building 781, Room 428
(512) 693-2000
(800) 633-3760
http://www.namitexas.org/

Parent Organizations
Community Parent Resource Center
1101 E. Schuster
El Paso, TX, 79902
(915) 217-2747
http://www.cdicelpaso.org/
Family to Family Network
13150 FM 529, Suite 106
Houston, TX, 77041
(713) 466-6304
http://www.familytofamilynetwork.org
Family Support Network, Texas A&M University
4225 Texas A&M University
College Station, TX, 77843-4225
(979) 845-4612
sh***@**mu.edu
Texas PTA
408 W. 11th Street
Austin, TX, 78701-2113
(512) 476-6769
(800) 825-5782
http://www.txpta.org/
Parent Training and Information Center (PTI)
TEAM Project
4501 Cartwright Road, Suite 605
Missouri City, Texas 77459
(281) 969-5944
pr*****@*******al.net
http://www.prntexas.org/texas-ptis/team-project-2/
Parent Organizations (cont)
Parent Training and Information Center (PTI)
PATH Project
1090 Longfellow Drive
Beaumont, TX, 77706-4819
(409) 898-4684
(800) 866-4726
br**********@***il.com
http://prntexas.org/texas-ptis/path-project/
Parent Training and Information Center (PTI)
PEN Project
1001 Main Street, Suite 701
Lubbock, TX, 79401
(806) 762-1434
(877) 762-1435 (in TX)
pe********@*******al.net
http://www.prntexas.org/texas-ptis/pen-project/
Texas Parent to Parent
3710 Cedar Street, Box 12
Austin, TX, 78705
(512) 458-8600
(866) 896-6001
http://www.txp2p.org/

Protection & Advocacy
Disability Rights Texas
2222 West Braker Lane
Austin, TX, 78758
(512) 454-4816 (V/TTY)
(800) 252-9108 (In TX)
(866) 362-2851 (Video Phone)
http://www.DisabilityRightsTx.org

Relay Services
(800) 735-2988 (V)
(800) 735-2989 (TTY),711 (TTY)
(800) 735-2991 (ASCII)
(877) 826-6607(Speech to Speech)

Special Education
Texas Education Agency
1701 N. Congress Avenue
Austin, TX, 78701-1494
(512) 463-9414
(800) 252-9668
http://www.tea.state.tx.us/index2.aspx?id=2147491399

Special Format Library
Talking Book Program
Texas State Library and Archives Commission
1201 Brazos
Austin, TX, 78701
(512) 463-5458
(800) 252-9605
http://www.texastalkingbooks.org/

Special Health Care Needs
Children with Special Health Care Needs (CSHCN) Services Program
Purchased Health Services Unit
Department of State Health Services
1100 W. 49th Street,
Austin, TX, 78714-9347
(512) 776-7355
(800) 252-8023
http://www.dshs.state.tx.us/cshcn/

Speech, Language and Hearing
Texas Speech-Language-Hearing Association
2025 M Street NW, Suite 800
Washington, DC 20036
Phone: (855)330-TSHA (8742)
http://www.txsha.org/

Transition Services
Division of IDEA Coordination
Texas Education Agency
1701 N. Congress Avenue
Austin, TX, 78701
(512) 463-9734
http://www.tea.state.tx.us/index2.aspx?id=2147496883

UCEDD
Texas Center for Disability Studies
The University of Texas at Austin
Commons Learning Center
10100 Burnet Road
Austin, TX, 78758
(512) 232-0740
(800) 828-7839
(512) 232-0762 (TTY)
http://tcds.edb.utexas.edu/
Center on Disability and Development
Texas A&M University
Harrington 637
College Station, TX, 77843-4225
(979) 845-4612
http://cdd.tamu.edu/

Vocational Rehabilitation
Department of Assistive and Rehabilitative Services
4800 N. Lamar
Austin, TX, 78751
(800) 628-5115
http://www.dars.state.tx.us/
Department of Aging and Disability Services
https://hhs.texas.gov/doing-business-hhs/provider-portals/long-term-care-providers/aging-disability-resource-center-adrc

Other Organizations
Easter Seals North Texas
1424 Hemphill Street
Fort Worth, TX 76104
888-617-7171
http://www.fortworth.easterseals.com/
Governor’s Committee on People with Disabilities
1100 San Jacinto
Austin, Texas 78701
(512) 463-5742
(512) 463-5746 (TTY)
711 (Relay Service)
http://www.governor.state.tx.us/disabilities

Utah

Eric and Kim Hoffman

CO, WY, UT

Email: ut**@*******ms.org

Utah Resources

ADA Center
Rocky Mountain ADA Center
3630 Sinton Road, Suite 103
Colorado Springs, CO, 80907
http://www.adainformation.org

Assistive Technology
Utah Assistive Technology Program
Center for Persons with Disabilities
Utah State University
6855 Old Main Hill
Logan, UT, 84322-6855
http://www.uatpat.org
Utah Center for Assistive Technology
1595 West 500 South
Salt Lake City, UT, 84104-5238
http://ucat.usor.utah.gov/

Autism
Autism Information Resources at the Utah Parent Center
2290 East 4500 South, Suite 110
Salt Lake City, UT, 84117
http://www.utahparentcenter.org

CHIP
(Health care for low-income uninsured children)
Utah CHIP
P.O. Box 143107
Salt Lake City, UT, 84114-3107
http://health.utah.gov/chip/index.htm

D D Council
Utah Developmental Disabilities Council
155 South 300 West, Suite 100
Salt Lake City, UT, 84101
http://www.utahddcouncil.org/

Developmental Disabilities
Division of Services for People with Disabilities
Department of Human Services
195 N 1950 West
Salt Lake City, UT, 84116
https://dspd.utah.gov/

Early Intervention
BabyWatch
Early Intervention Program
Utah Department of Health
P.O. Box 144720
Salt Lake City, UT, 84114-4720
http://www.utahbabywatch.org

Epilepsy
Epilepsy Association of Utah
1995 West 9000 South Level B
West Jordan, UT, 84088
http://www.epilepsyut.org

Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/UT
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc of Washington County
523 Sunland Dr., Suite A
St. George, UT 84790
td*****@******st.com
www.thearc.org

Mediation
Utah State Office of Education
250 East 500 South
P.O. Box 144200
Salt Lake City, UT, 84114
http://www.schools.utah.gov

Mental Health
Allies with Families
450 East 1000 North, Suite 311
North Salt Lake, UT, 84054
al****@****************es.org
http://www.allieswithfamilies.org
NAMI-Utah
450 South 900 East
Salt Lake City, UT, 84102
http://www.namiut.org

Mental Health – Youth
Children, Youth and Families Team
Utah Division of Substance Abuse and Mental Health
195 N 1950 West
Salt Lake City, UT, 84116
(801) 538-3939
ds***@**ah.gov
https://dsamh.utah.gov

Parent Organizations
Family to Family Network
A Project of the Utah Parent Center
230 West 200 South, Suite 1101
Salt Lake City, UT, 84101
http://www.utahfamilytofamilynetwork.org/
Parent Teacher Association (PTA)
Utah Congress of Parents and Teachers
5192 S. Greenpine Drive
Salt Lake City, UT, 84123
http://www.utahpta.org
Parent Training and Information Center (PTI)
Utah Parent Center
230 West 200 South, Suite 1101
Salt Lake City, UT, 84101
http://www.utahparentcenter.org/

Preschool, Disabilities
Utah State Office of Education
250 East 500 South
P.O. Box 144200
Salt Lake City, UT, 84114-4200
(801) 538-7500
http://www.schools.utah.gov/specialeducation/Programs
/Preschool

Protection & Advocacy
Disability Law Center
205 North 400 West
Salt Lake City, UT, 84103
http://www.disabilitylawcenter.org

Relay Services
(888) 735-5906 (V)
(800) 346-4128 (V/TTY); 711 (TTY)
(800) 346-4128 (TTY)
(888) 346-5822 (Speech to Speech)

Special Education
Special Education Services
State Office of Education
250 East 500 South
P.O. Box 144200
Salt Lake City, UT, 84114-4200
http://www.schools.utah.gov

Special Format Library
Utah State Library Division
Program for the Blind and Disabled
250 North 1950 West, Suite A
Salt Lake City, UT, 84116-7901
http://blindlibrary.utah.gov

Special Health Care Needs
Utah Department of Health
Community and Family Health Services
Children with Special Health Care Needs
44 North Medical Drive
P.O. Box 144610
Salt Lake City, UT, 84114-4610
http://health.utah.gov/cfhs
Utah Division of Substance Abuse and Mental Health
120 North 200 West, Room 209
Salt Lake City, UT, 84103
(801) 538-3939
ds***@**ah.gov
https://dsamh.utah.gov/
Family Voices of Utah
44 N. Medical Drive
P.O. Box 144650
Salt Lake City, UT, 84114-4650
http://www.utahfamilyvoices.org/

Speech, Language, and Hearing
Utah Speech-Language-Hearing Association
1379 31st Street
Ogden, UT, 84403
http://www.ushaonline.net/

Transition Services
Utah State Office of Education
SPECIAL EDUCATION
250 East 500 South
P.O. Box 144200
Salt Lake City, UT, 84114-4200
http://www.schools.utah.gov

UCEDD
Center for Persons with Disabilities
Utah State University
University Center for Excellence in Disabilities
6800 Old Main Hill
Logan, UT, 84322-6800
http://www.cpdusu.org

Vocational Rehabilitation
Utah State Office of Rehabilitation
P.O. Box 144200
Salt Lake City, UT, 84114-4200
http://www.usor.utah.gov

Other Organizations
Utah Birth Defect Network
Department of Health
P.O. Box 144697
Salt Lake City, UT, 84114-4697
http://health.utah.gov/birthdefect
Access Utah Network (Statewide Information and Referral for Disability Issues)
Salt Lake City, UT, 84101
(801) 533-4646
Turn Community Services
Check website for county locations
Phil Shumway, Executive Director
ph*********@********ms.org
http://turncommunityservices.org/
Art Access/VSA arts of Utah
230 South 500 West #125
Salt Lake City, UT, 84101
http://www.accessart.org
Work Ability Utah
Utah Department of Health
Division of Health Care Financing
c/o Office of Rehabilitation
1595 West 500 South
Salt Lake City, UT, 84104
https://211utah.org/

Vermont

Leah Baigell

CT, RI, MA, VT, NH, ME

Email: ve*****@*******ms.org

Vermont Resources

ADANew England ADA Center
180-200 Portland Street, Suite 1
Boston, MA, 02114
http://www.newenglandada.org
Assistive TechnologyVermont Assistive Technology Project
HC 2 South
280 State Drive
Waterbury, VT, 05671
http://atp.vermont.gov/index.php
CHIP (health care for low-income uninsured children)
https://portal.healthconnect.vermont.gov/VTHBELand/welcome.action
D D CouncilVermont Developmental Disabilities Council
322 Industrial Lane
Berlin, Vermont 05633-0206
http://ddc.vermont.gov
Developmental DisabilitiesDivision of Developmental Services
Department of Disabilities, Aging and Independent Living
HC 2 South, 280 State Drive
Waterbury VT 05671-2030
http://dail.vermont.gov
Early InterventionDepartment for Children and Families
Child Development Division
NOB 1 North
280 State Drive
Waterbury, VT 05671-1040
http://dcf.vermont.gov/cdd
EpilepsyEpilepsy Foundation of Vermont
P.O. Box 6292
Rutland, VT 05702
http://www.epilepsyvt.org****
Independent LivingVermont Center for Independent Living
11 E. State Street
Montpelier, VT, 05602-3008
http://www.vcil.org
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org
MediationVermont Agency of Education
219 North Main Street, Suite 402
Barre, VT 05641
https://education.vermont.gov/student-support/special-education/laws-and-regulations/dispute-resolution
Mental HealthDepartment of Mental Health
Agency of Human Services
P.O. Box 70
108 Cherry Street
Burlington, VT, 05402-0070
http://www.healthvermont.gov
Mental Health America ( to identify an NMHA chapter in your state )
500 Montgomery Street, Suite 820
Alexandria, VA, 22314-2971
http://www.mentalhealthamerica.net
NAMI Vermont
600 Blair Park Road, Suite 301
Williston VT 05495
http://www.namivt.org
Vermont Federation of Families for Children’s Mental Health
600 Blair Park Road
Williston VT 05495
http://www.vffcmh.org
Mental Health – YouthDepartment of Mental Health
108 Cherry Street
P.O. Box 70
Burlington, VT, 05402-0070
http://www.healthvermont.gov
Parent OrganizationsParent Teacher Association (PTA)
Vermont Congress of Parents and Teachers
82 Overlake Drive
Milton, TB 05468
(802) 644-6652
https://www.facebook.com/VermontStatePTA
Parent Training and Information Center (PTI)
Vermont Family Network
600 Blair Park Road, Suite 240, Williston, VT, 05495
Or
135 North Main St Suite #4, Rutland, VT 05701
http://www.vermontfamilynetwork.org
Preschool, DisabilitiesVermont Agency of Education
219 N. Main St., Suite 402
Barre, VT 0564
(802) 479-1030
ao********@*****nt.gov
http://education.vermont.gov/student-support/special-education
Protection & AdvocacyDisability Rights Vermont
141 Main Street, Suite 7, Montpelier, VT, 05602
OR
1 Scale Ave., Suite 23, Howe Center, Bldg. 14, Rutland, VT 05701
http://www.disabilityrightsvt.org
Relay Services(800) 253-0195 (V)
(800) 253-0191 (TTY); 711 (TTY)
(800) 229-5746 (Speech to Speech – English)
(866) 260-9470 (Speech to Speech – Spanish)
Special EducationVermont Agency of Education
219 North Main Street, Suite 402
Barre, VT 05641
http://www.state.vt.us/educ/new/html/pgm_sped.html
Special Format LibraryVermont Department of Libraries
Special Services Unit
578 Paine Turnpike N
Berlin, VT, 05602
li*****@*****nt.gov
(802) 828-3273/(800) 479-1711
http://libraries.vermont.gov/library_for_the_blind/application
Special Health Care NeedsChildren with Special Health Needs
Department of Health
108 Cherry Street
P.O. Box 70
Burlington, VT, 05402
http://www.healthvermont.gov/family/cshn/cshn.aspx
Speech, Language, and HearingVermont Speech-Language-Hearing Association
http://www.vsha.us
State Web SiteConnect with your state’s official website to find all manner of state agencies and information, including how to contact to your governor and/or your representatives in the Senate and House:
http://www.vermont.gov/portal
Transition ServicesUniversity of Vermont
Burlington, VT 05405
(802) 656-3131
http://www.med.uvm.edu/vchip/yit
UCEDDCenter on Disability and Community Inclusion
The UCEDD of Vermont/University of Vermont
College of Education and Social Services
Mann Hall – 3rd Floor
208 Colchester Avenue
Burlington, VT, 05405-1757
http://www.uvm.edu/~cdci
VocationalVocational Rehabilitation Division
Department of Aging and Independent Living
Agency of Human Services
HC 2 South, 280 State Dr.
Waterbury, VT 05671-2040
http://www.vocrehab.vermont.gov
OtherAddison County Parent Child Center
126 Monroe St
Middlebury, VT, 05753
http://www.addisoncountypcc.org
Vermont Coalition for Disability Rights
11 East State St., Suite 2
Montpelier, VT, 05602
http://www.vcdr.org
VSA arts of Vermont
21 Carmichael St Suite 206
Essex Junction, VT 05452
http://www.vsavt.org

Virginia

Liz & Bill Yates

We are Dr. William and Mrs. Elizabeth Yates (AKA Bill and Liz), parents of our SMSer 32-year-old daughter, Mary (AKA “Puzzle queen”). She is our one daughter of six children. We live in Northern Virginia, where Bill is an adjunct professor with two universities, specializing in the discipline of project management. Liz is a special education teacher and professionally certified educational therapist. After working through the puzzle of Mary’s various challenges for 28 years, we were finally made aware of SMS through our neurologist’s nurse. Finding the PRISMS website, we were immediately convinced to have genetic testing done. Being lifelong learners, we have researched and learned much (often by trial and error) about what makes Mary unique and how to work through those sometimes very challenging moments and days. With support from church friends, and PRISMS’ research, we continue to learn and hope to listen to, and offer support, to other families who have a desire to connect on this journey.

Email: vi******@*******ms.org

Martina Vit

Hello! My name is Martina Vit. I am excited to be here as a new Regional Representative for PRISMS. I am also a proud SMS mom to my 27-year-old daughter Emari.
My husband Miguel and I are originally from Michigan. Go blue! We moved to Springfield, VA in 2021, We are empty nesters and a blended family with four adult daughters, including Emari, as well as three grandkids. (Yes, finding love with a partner who accepts all things SMS is possible!)
We are celebrating the one-year anniversary of Emari living in a group home here in Springfield as of August 2024. It was a rough and emotional journey to get there, though we are happy with the outcome. I am happy to share about our transition if it can help others.
I work full time as a teacher and part time as a therapist. My husband is a facilities manager at a senior living facility. We enjoy exploring new places, Topgolf, and traveling.
Emari was diagnosed when she was in 1st grade. This was a difficult time as I was a single mom parenting three little girls. Times were different, and I blamed myself for many of the challenges we experienced. The diagnosis was almost a relief as I could finally understand and explain to others the cause behind major behavior challenges and developmental delays. I am thankful to PRISMS for providing guidance and support.

The purpose of the regional rep program is to help educate and connect families with children who have SMS. I look forward to building connection and serving as a resource. Please send me an email and I will do my best to help you.

Email: vi******@*******ms.org

Virginia Resources

ADA Center
Mid-Atlantic ADA Center
401 North Washington Street, Suite 450
Rockville, MD, 20805
http://www.adainfo.org

Assistive Technology
Virginia Assistive Technology System
8004 Franklin Farms Drive
Richmond, VA, 23229
http://www.vats.org

Autism
Autism Society of Central Virginia
PO Box 29364
Richmond, VA, 23242-0364
http://www.asacv.org

CHIP
(health care for low-income uninsured children)
FAMIS
P.O. Box 1820
Richmond, VA, 23218-1820
www.coverva.org/programs_famis.cfm

D D Council
Virginia Board for People with Disabilities
Ninth Street Office Building
202 N. Ninth Street, 9th Floor
Richmond, VA, 23219
http://www.vaboard.org

Developmental Disabilities
Virginia Department of Behavioral Health & Development Services
1220 Bank St.
Richmond, VA, 23219
(804) 786-3921
http://www.dbhds.virginia.gov/

Early Intervention
Infant & Toddler Connection of Virginia
Virginia Department of Behavioral Health and Developmental Services
P.O. Box 1797
Richmond, VA, 23219-1797
http://www.infantva.org/

Epilepsy
Epilepsy Foundation of Virginia
560 Ray C Hunt Dr.
Charlottesville, VA, 22903
(434) 924-8669
SR***@******ia.edu
https://www.epilepsyva.com/

Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/VA
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org

Learning Disabilities
Learning Disabilities Association of Virginia
3914 Monument Avenue
Richmond, VA, 23230-3902
http://www.ldavirginia.org

Mediation
Virginia Department of Education
Complaints, Mediation, Due Process
P.O. Box 2120
Richmond, VA, 23218-2120
http://www.doe.virginia.gov/special_ed/resolving_disputes/

Mental Health
Department of Mental Health
1220 Bank St.
Richmond, VA, 23219
(804) 786-3921
http://www.dbhds.virginia.gov/
Mental Health America of Virginia
2008 Bremo Rd, Ste 101
Richmond, VA 23226
http://www.mhav.org
NAMI Virginia
P.O. Box 8260
Richmond, VA, 23226-0260
(804) 285-8264/(800) 950-6264
https://namivirginia.org/

Mental Health – Youth
Virginia Department of Behavioral Health & Development Services
1220 Bank St.
Richmond, VA, 23219
(840) 786-3921
http://www.dbhds.virginia.gov/

Parent Organizations
Community Parent Resource Center
(Serving Arlington, Fairfax, Loudon, and Prince William Counties, and city of Alexandria)
Formed Families Together
4031 University Drive, Suite 100
Fairfax, VA, 22030
http://www.formedfamiliesforward.org
The ARC of Virginia
2147 Staples Mill Rd.
Richmond, VA, 23230
(804) 649-8481/(888) 604-2677
th********@********va.org
http://www.thearcofva.org/
Parent’s Guide to Special Education
Virginia Department of Education
http://www.doe.virginia.gov/special_ed/parents/parents_guide.pdf
http://www.doe.virginia.gov/special_ed/parents/
Virginia Parent Teacher Association (PTA)
1027 Wilmer Avenue
Richmond, VA, 23227
http://www.vapta.org
Parent Training and Information Center (PTI)
Parent Educational Advocacy Training Center (PEATC)
100 N. Washington Street, Suite 234
Falls Church, VA, 22046
http://www.peatc.org/
Parent to Parent of Virginia
P.O. Box 38341
Richmond, VA, 23231
PT*****@*ol.com
https://ptpofva.wordpress.com/
Virginia Federation of Families (a program of the Arc of VA)
2025 E. Main Street, Suite 107
Richmond, VA, 23223
http://www.medicalhomeplus.org

Preschool, Disabilities
Special Education Instructional Services
Virginia Department of Education
P.O. Box 2120
Richmond, VA, 23218-2120
http://www.doe.virginia.gov

Protection & Advocacy
disAbility Law Center for Virginia
1910 Byrd Avenue, Suite 5
Richmond, VA, 23230
http://www.dlcv.org

Relay Services
(800) 828-1140 (V)
(800) 828-1120 (TTY); 711 (TTY)
(800) 229-5746 (Speech to Speech – English)
(866) 260-9470 (Speech to Speech – Spanish)

Special Education
Division of Special Education and Student Services
Department of Education
P.O. Box 2120
Richmond, VA, 23218-2120
http://www.doe.virginia.gov/special_ed/

Speech, Language, and Hearing
Speech-Language-Hearing Association of Virginia, Inc.
3126 W. Cary Street, #436
Richmond, VA, 23221
http://www.shav.org

Special Format Library
Virginia Library and Resource Center
395 Azalea Avenue
Richmond, VA, 23227
http://www.vdbvi.org/

Special Health Care Needs
Virginia Department of Health
109 Governor St.
Richmond, VA, 23219
Division of Child and Adolescent Health
http://www.vdh.virginia.gov/

UCEDD
Partnership for People with Disabilities
Virginia University Center for Excellence
Virginia Commonwealth University
PO Box 843020
700 E. Franklin Street
Richmond, VA, 23284-3020
http://www.vcu.edu/partnership

Vocational Education and Rehabilitation
Education Services Manager
Virginia Department of Rehabilitative Services
Richmond, VA, 23229
http://www.vadrs.org
Office of Career and Technical Education Services
Virginia Department of Education
http://www.pen.k12.va.us/instruction/career_technical/index.shtml

Other Organizations
Easter Seals UCP North Carolina & Virginia
5171 Glenwood Ave., Suite 211
Raleigh, NC 27612
(800) 662-7119
http://www.easterseals.com/NCVA/?referrer=https://www.google.com/
Medical Home Plus
8719 Forest Hill Avenue
Bon air, VA 23235
www.medicalhomeplus.org

Washington

Ana Witherspoon

My name is Ana Witherspoon, and I live in Spokane Valley, Washington. I have a younger brother who is diagnosed with SMS. He was born in 2004 and was diagnosed when he was 4 years old. I want to represent PRISMS because I want to get more involved with the SMS community and do my best to be a resource.

Growing up with a brother with SMS changed my life in the most unexpected ways, and I want to help families in whatever stage they’re in with their child with SMS. It can be powerful and relieving to connect with someone else who shares a similar experience to you. For me, I really only had my family to share that experience and I felt a bit isolated from others who didn’t really know my brother or what it was like to live with a sibling with SMS. I hope that I can help and guide families to the right resources as they learn more about their child and SMS. PRISMS is a great place for families to gain resources and connect with those in the SMS community!

Email: wa********@*******ms.org

Esteban Delgadillo

My name is Esteban Delgadillo and I am the father of Javi, a 20 year old with SMS. We found out that he was diagnosed with SMS at 4 years old. We have learned a lot and made some mistakes along the way but overall, he has turned out to be a great son, brother, and recently an uncle. We also have 4 other daughters, two older than him and two younger than him. My eldest daughter is also a regional representative for Washington and lives in the Spokane area. We’ve come a long way from where we started and have some experiences to share. Javi is involved in a lot of Special Olympics and other school activities. I hope to be able to help other families that may have questions or just need to be listened to or to connect with resources. I also am open to learning some new things too! We aren’t done with the journey, just in a different season.

Email: wa********@*******ms.org

Washington Resources

ADA Center
Northwest ADA Center
Center for Continuing Education in Rehabilitation
University of Washington
www.nwadacenter.org

Assistive Technology
Washington Assistive Technology Act Program
University of Washington Center for Technology & Disability Studies
uwctds.washington.edu

Apple Health for Kids
Health care for low-income uninsured children
www.hca.wa.gov/free-or-low-cost-health-care/i-need-medical-dental-or-vision-care/children

D D Council
Washington Developmental Disabilities Council
www.ddc.wa.gov

Developmental Disabilities
Division of Developmental Disabilities
Department of Social and Health Services
www.dshs.wa.gov/ddd

Epilepsy
Epilepsy Foundation Washington
www.epilepsy.com/washington

Early Intervention
Infant Toddler Early Intervention Program
Division of Developmental Disabilities
Department of Social and Health Services
del.wa.gov/development/esit/Default.aspx

Independent Living
Contact information for the Statewide Independent Living Council (SILC):
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/WA
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
www.ncil.org

Intellectual & Developmental Disabilities
The Arc of Washington State
www.arcwa.org

Learning Disabilities
Learning Disabilities Association of Washington
www.ldawa.org

Mediation
Sound Options Group, LLC
Bainbridge Island, WA
somtg.com

Mental Health
Mental Health Division
Department of Social and Health Services
www.dshs.wa.gov/dbhr/index.shtml

Parent Organizations
Community Parent Resource Center
Open Doors for Multi Cultural Families
www.multiculturalfamilies.org
Parent Teacher Association (PTA)
Owen Atkins, Interim Executive Director
Washington State PTA
www.wastatepta.org
PAVE
Washington State Parent Information and Training Center
www.wapave.org

Preschool, Disabilities
Early Childhood Services
Special Education Learning Improvement
Office of Superintendent of Public Instruction
www.k12.wa.us

Protection & Advocacy
Disability Rights Washington
www.disabilityrightswa.org

Relay Services
(800) 833-6384 (Voice)
(800) 833-6388 (TTY); 711 (Voice or TTY)
(800) 833-6385 (Telebraille)
(877) 833-6341 (Speech-to-Speech)
http://www.washingtonrelay.com/

Special Education
Special Education Operations
Office of Superintendent of Public Instruction
www.k12.wa.us/specialed

Special Format Library
Washington Talking Book and Braille Library
www.wtbbl.org

Special Health Care Needs
Children with Special Health Care Needs
Department of Health
doh.dc.gov/service/children-and-youth-special-health-care-needs

Speech, Language, and Hearing
Washington Speech-Language-Hearing Association
www.wslha.org

Washington State Website
Connect with your state’s official website to find all manner of state agencies and information, including how to contact your governor and/or your representatives in the Senate and House:
www.access.wa.gov

Transition Services
Center for Change in Transition Services
College of Education, Seattle University
http://www.seattleu.edu/ccts

UCEDD
Center on Human Development and Disabilities
University of Washington – Seattle, WA
http://www.depts.washington.edu/chdd

Vocational Education and Rehabilitation
Washington State Department of Social and Health Services
www.dshs.wa.gov/dvr

Other Organizations
PROVAIL
www.provail.org/
Easter Seals Washington
www.wa.easterseals.com
Summit Assistance Dogs
Anacortes, WA
www.summitdogs.org

Washington D. C.

Laura Russell

DC, MD

Email: wa**********@*******ms.org

Washington D. C. SMS Clinic

Washington, DC

Smith-Magenis Multidisciplinary Clinic

Children’s National Hospital
Ages seen: 6 mos. to 65 yrs.
Medical Director: Andrea Gropman, MD, FAAP, FACMG, FANA
Clinic Coordinator: Cecilia Bouska
Email: cb*****@***************al.org
Phone: 202-476-6249
Web: https://childrensnational.org/departments/center-for-neuroscience-and-behavioral-medicine/programs-and-services/neurogenetics-program

West Virginia

Mary Hards

OH, WV

Email: we**********@*******ms.org

Tracie Belcher

My name is Tracie Belcher. My daughter Emily and I live in the mountain state, West Virginia. Emily was born in 1990 and diagnosed with SMS in 2000. We have been a part of the PRISMS community since her diagnosis, having attended conferences, fundraising events and social gatherings. I also volunteered for a time as the PRISMS newsletter editor.

I have had the opportunity to be involved in the special needs community in my state by providing assistance and resources related to guardianship, estate planning, social opportunities and educational needs.

I look forward to being the regional representative for West Virginia and I encourage anyone in my state to contact me at any time if you need assistance, support or just someone to talk with who understands.

Email: we**********@*******ms.org

West Virginia Resources

ADA Center
Mid-Atlantic ADA Center
401 North Washington Street, Suite 450
Rockville, MD, 20805
http://www.adainfo.org

Advocacy
West Virginia Advocates, Inc.
1207 Quarrier St., Litton Bldg. Suite 400
Charleston, WV, 25301
http://www.wvadvocates.org

Assistive Technology
Rehab Technology Department
Division of Rehabilitation Services
107 Capitol St,
Charleston, WV 25301
http://www.wvdrs.org

Autism
West Virginia Autism Training Center
Marshall University
One John Marshall Drive
Huntington, WV, 25755-2430
http://www.marshall.edu/atc
Autism Society of West Virginia
PO Box 7
Huntington, WV, 25706-0007
http://www.autismwv.blogspot.com

CHIP Program
(Health care for low-income uninsured children)
WV CHIP
(877) 982-2447
http://www.chip.wv.gov/Pages/default.aspx
Developmental DisabilitiesDivision of Developmental Disabilities
Bureau for Behavioral Health and Health Facilities
Department of Health and Human Resources
350 Capitol Street, Room 350
Charleston, WV, 25301-3702
http://www.wvdhhr.org

DD Council
West Virginia Developmental Disabilities Council
110 Stockton Street
Charleston, WV, 25312
www.ddc.wv.gov

Early Intervention
West Virginia Birth to Three
Office of Maternal, Child and Family Health
Bureau of Public Health
350 Capitol Street, Room 427
Charleston, WV, 25301
http://www.wvdhhr.org/birth23
Office of Special Programs, Extended and Early Learning
1900 Kanawha Boulevard East
Building 6, Room 304
Charleston, WV, 25305-0330
http://wvde.us/special-education/

Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state,
contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org

Learning Disabilities
Learning Disabilities Association of America – West Virginia
(304) 744-8188
du******@*ol.com
https://ldaamerica.org/lda-chapters/west-virginia/

Mediation
West Virginia Department of Education
Office of Assessment and Accountability
1900 Kanawha Boulevard East
Building 6, Room 304
Charleston, WV, 25305-0330
http://wvde.state.wv.us/osp/compliance/mediation.html

Mental Health
Bureau for Behavioral Health and Health Facilities
Department of Health and Human Resources
350 Capitol Street, Room 350
Charleston, WV, 25301-3702
http://www.dhhr.wv.gov
NAMI WV – National Alliance for Mental Illness in WV
3803 N. Fairfax Dr, Ste 100
Arlington, VA 22203
Check website for local affiliates
http://nami.org
Mountain State Parents-CAN
1739 St. Mary’s Ave., Suite B
Parkersburg, WV 26101
(304) 428-0365/(800) 244-5385
http://www.mspcan.org
Mental Health – YouthDepartment of Health and Human Resources
350 Capitol Street, Room 350
Charleston, WV, 25301-3702
http://www.wvdhhr.org

Parent Organizations
Parent Teacher Association (PTA)
West Virginia Congress of Parents and Teachers
P.O. Box 3557
Parkersburg, WV, 26103-3557
http://www.wvpta.net
Parent Training and Information Center (PTI)
West Virginia Parent Training and Information (WVPTI)
99 Edmiston Way, Suite 101-102
Buckhannon, WV, 26301
(800) 281-1436
(304) 472-5697
http://www.wvpti-inc.org
Parent-Educator Resource Center
West Virginia Department of Education
Office of Special Programs, Extended and Early Learning
1900 Kanawha Boulevard E, Building 6, Room 304
Charleston, WV, 25305
http://wvde.state.wv.us/osp/perc.html

Relay Services
(800) 982-8772 (V)
(800) 982-8771 (TTY); 711 (TTY)
(800) 229-5746 (Speech to Speech – English)
(866) 260-9470 (Speech to Speech – Spanish)

Speech, Language, and Hearing
West Virginia Speech-Language-Hearing Association
325 Jones Avenue
Oak Hill, WV, 25901
http://www.wvsha.org

Special Education
Office of Special Programs, Extended and Early Learning
Department of Education
1900 Kanawha Boulevard East
Building 6, Room 304
Charleston, WV, 25305-0330
http://wvde.state.wv.us/osp/

Special Format Library
West Virginia Library Commission
Special Libraries-Blind and Physically Handicapped
1900 Kanawha Blvd. E
Cultural Center, Bldg. 9
Charleston, WV, 25305-0330
(304) 558-4061
(800) 642-9021
http://www.librarycommission.wv.gov/services/specialservices/pages/default.aspx

Special Health Care Needs
Children with Special Health Care Needs
Office of Maternal Child and Family Health
Bureau for Public Health
West Virginia Department of Health and Human Resources
350 Capitol Street, Room 427
Charleston, WV, 25301-3714
(304) 558-5388
www.wvdhhr.org/cshcn

State Web Site
Connect with your state’s official website to find all manner of state agencies and information, including
how to contact your governor and/or your representatives in the Senate and House:
http://www.wv.gov/

Transition Services
Office of Special Programs, Extended and Early Learning
West Virginia Department of Education
1900 Kanawha Boulevard East
Building 6, Room 304
Charleston, WV, 25305-0330
http://wvde.state.wv.us/osp/

UCEDD
Center for Excellence in Disabilities
West Virginia University
950 Hartman Run Road, Research Park
Morgantown, WV, 26505
http://www.cedwvu.org/

Vocational Education & Rehabilitation
Division of Technical and Adult Education Services
West Virginia Department of Education
107 Capitol St,
Charleston, WV 25301
http://wvde.state.wv.us
Division of Rehabilitation Services
State Capitol Complex
P.O. Box 50890
Charleston, WV, 25305-0890
http://www.wvdrs.org

Other
West Virginia Mental Health Consumers Association
713 Bigley Ave.
Charleston, WV, 25302-3356
(304) 345-7312
(800) 598-8847
Easter Seals West Virginia
1305 National Road
Wheeling, WV, 26003-5780
http://www.wv.easterseals.com

Wisconsin

Brianna Ryczek

My name is Brianna Ryczek. My sister, Amber Collins, is my connection to SMS. Amber is a beautiful young lady now in her twenties. She is a wonderful aunty to my son and they spend a lot of time together. Our family is located about 30 miles north of Green Bay, Wisconsin and I have been a member of PRISMS for a few years. It helps our family in difficult times to see others who can relate to SMS from across the world! Amber is an avid member of Facebook and loves to write to others (some of it may be jibberish) and would love additional friends, so let me know if your interested. She also enjoys video chats. As far as information about myself, I simply love my sister so much and want to help others in this community. I encourage others to reach out and make connections and would be happy to help!

Email: wi*******@*******ms.org

Wisconsin Resources

ADA CenterGreat Lakes ADA Center
University of Illinois at Chicago
Institute on Disability & Human Development (MC 728)
1640 West Roosevelt Road, Room 405
Chicago, IL, 60608
http://www.adagreatlakes.org

Assistive Technology
Wistech
Office of Independence and Employment
1 W. Wilson, Room 951
P.O. Box 7851
Madison, WI, 53707-7851
http://dhs.wisconsin.gov/disabilities/wistech/index.htm
CHIP (health care for low-income uninsured children)
Wisconsin BadgerCare
P.O. Box 6678
Madison, WI, 53716
http://dhs.wisconsin.gov/BadgerCarePlus/

D D Council
Board for People with Developmental Disabilities
201 W. Washington Avenue, Suite 110
Madison, WI, 53703
http://www.wi-bpdd.org/

Developmental Disabilities
Developmental Disabilities Services Section
Division of Long Term Care
Department of Health Services
1 W. Wilson Street, Room 418
Madison, WI, 53707-7851
https://www.dhs.wisconsin.gov/long-term-care-support.htm

Early Intervention
Division of Long Term Care
Department of Health Services
P.O. Box 7851
Madison, WI, 53707-7851
https://www.dhs.wisconsin.gov/birthto3/index.htm

Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/WI
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
2013 H St. NW
Washington, DC, 20036
http://www.ncil.org

Intellectual & Developmental Disabilities
The Arc Wisconsin
PO Box 201
Stoughton, WI 53589
in**@***wi.org
https://arcwi.org/

Learning Disabilities
Learning Disabilities Association of Wisconsin
P.O. Box 14690
Madison, WI, 53708-0690
http://www.LDAWisconsin.com

Mediation
Wisconsin Special Education Mediation System
Burns Mediation Services
P.O. Box 107
Hartland, WI, 53029-0107
http://www.wsems.us

Mental Health
Mental Health America of Wisconsin
600 W. Virginia St, Suite 502
Milwaukee, WI 53204
http://www.mhawisconsin.org

Parent Organizations
Community Parent Resource Center
Alianza Latina Aplicando Soluciones
1615 S. 22nd St., Ste 109
Milwaukee, WI, 53204
http://alianzalatinawi.org
Wisconsin Statewide Parent-Educator Initiative
25 S. Webster Street, Madison, WI 53703
P.O. Box 7841
Madison, WI 53707
http://dpi.wi.gov/sped/families
Wisconsin Parent Teacher Association (PTA)
4797 Hayes Road, Suite 102
Madison, WI, 53704-3256
http://www.wisconsinpta.org/
Parent Training and Information Center (PTI)
Wisconsin FACETS
600 W. Virginia Street, Suite 501
Milwaukee, WI, 53204
http://www.wifacets.org
Parent to Parent of Wisconsin
1020 Kabel Avenue
Rhinelander, WI, 54501
http://www.p2pwi.org

Preschool, Disabilities
Early Childhood Special Education
P.O. Box 7841
Madison, WI, 53707-7841
http://dpi.wi.gov/sped/early-childhood

Protection & Advocacy
Disability Rights Wisconsin
131 W. Wilson St., Suite 700
Madison, WI, 53703
http://www.disabilityrightswi.org/
Relay Services(800) 947-6644 (V)
(800) 947-3529 (TTY); 711 (TTY)
(800) 272-1773 (ASCII); (800) 267-8867 (Fast ASCII)
(800) 833-7637 (Speech to Speech)

Special Education
Department of Public Instruction
125 S. Webster Street
P.O. Box 7841
Madison, WI, 53707-7841
http://dpi.wi.gov/sped/topics

Special Health Care Needs
Family Voices of Wisconsin
Family-to-Family Health Information Network
P.O. Box 55029
Madison, WI, 53705
http://www.familyvoicesofwisconsin.com/
Department of Health Services
Children’s Special Health Care Needs Program
1 W. Wilson Street
P.O. Box 2659
Madison, WI, 53703
https://www.dhs.wisconsin.gov/cyshcn/index.htm

Special Format Library
Wisconsin Talking Book and Braille Library (WTBBL)
813 W. Wells Street
Milwaukee, WI, 53233-1436
http://dpi.wi.gov/talkingbooks

Speech, Language, and Hearing
Wisconsin Speech-Language-Pathology and Audiology Professional Association
563 Carter Court, Suite B
Kimberly, WI 54316
http://www.wisha.org

Transition Services
Wisconsin Statewide Transition Initiative
http://www.witig.org/

UCEDD
Waisman Center
University of Wisconsin – Madison
1500 Highland Avenue
Madison, WI, 53705-2280
http://ucedd.waisman.wisc.edu

Vocational Education, Disabilities
Career and Technical Education
Department of Public Instruction
P.O. Box 7841
Madison, WI, 53707-7841
http://dpi.wi.gov/cte?old=cte.dpi.wi.gov/

Vocational Rehabilitation
Division of Vocational Rehabilitation
Department of Workforce Development
201 East Washington Avenue
PO Box 7946
Madison, WI, 53707
http://dwd.wisconsin.gov/dvr/

Other Organizations
Easter Seals Wisconsin
101 Nob Hill Road, Suite 301
Madison, WI, 53713
https://www.eastersealswisconsin.com/
Wisconsin First Step
The Parenting Place
Various Locations
(608) 784-8125
(800) 873-1768
http://www.theparentingplace.net
NAMI Wisconsin
4223 W. Beltline Highway
Madison, WI, 53711
http://www.namiwisconsin.org
Wisconsin Family Ties
1-800-422-7145
http://www.facebook.com/wisconsinfamilyties
http://www.wifamilyties.org/
VSA arts of Wisconsin, Inc.
1709 Aberg Avenue, Suite 1
Madison, WI 53704
http://www.vsawis.org
Governor’s Committee for People with Disabilities
1 W. Wilson Street, Room 551
Madison, WI, 53703
(608) 266-9354
https://gcpd.wisconsin.gov

Wyoming

Eric and Kim Hoffman

CO, WY, UT

Email: wy*****@*******ms.org

Wyoming Resources

ADA Center
Rocky Mountain ADA Center
3630 Sinton Road, Suite 103
Colorado Springs, CO, 80907
http://www.adainformation.org

Assistive Technology
Wyoming Assistive Technology Resources
Wyoming Institute for Disabilities
University of Wyoming, Department 4298
1000 E. University Avenue
Laramie, WY, 82071
http://wind.uwyo.edu

Career & Technical Education
Wyoming Department of Education
CTE Consultant: Career Guidance, Perkins Information
Tonya Gerharter
(307) 777-6808
to************@*yo.gov
https://edu.wyoming.gov/in-the-classroom/career-tech-ed/

CHIP Program
(health care for low-income uninsured children)
Wyoming Department of Health
Office of Healthcare Financing/State Children’s Health Insurance Programs
6101 Yellowstone Road, Suite 210
Cheyenne, WY, 82002
http://health.wyo.gov/chip

Developmental Disabilities
Department of Health – Behavioral Health Division
401 Hathaway Bldg
Cheyenne, WY, 82002
(866) 571-0944/(307) 777-7656
https://health.wyo.gov/behavioralhealth/dd/

D D Council
Brenda Oswald, Executive Director
Governor’s Planning Council on Developmental Disabilities
122 W. 25th Street
Herschler Building, 1st West
Cheyenne, WY, 82002
http://ddcouncil.state.wy.us

Early Intervention
Early Intervention and Education Program
Department of Health – Developmental Disabilities Division
6101 Yellowstone Road, Suite 186E
Cheyenne, WY, 82002
http://health.wyo.gov/ddd/earlychildhood/index.html

Independent Living
Wyoming Services for Independent Living/WSIL (provides community services for individuals with disabilities, serving Western Wyoming)
1156 S. 2nd Street
Lander, WY, 82520
http://www.wysil.org/
Wyoming Independent Living Rehabilitation, Inc.
305 W. 1st Street
Casper, Wyoming, 82601
http://www.wilr.org

Mediation
Wyoming Department of Education Individual Learning Division
2300 Capitol Ave
Cheyenne, WY 82002
(800) 228-6194
https://edu.wyoming.gov/in-the-classroom/special-programs/dispute-resolution/

Mental Health
Department of Health – Behavioral Health Division
6101 Yellowstone Road, Suite 220
Cheyenne, WY, 82002-0480
http://www.health.wyo.gov/mhsa/index.html
NAMI Wyoming
133 W. 6th
Casper, WY, 82601
http://www.namiwyoming.org
UPLIFT
4007 Greenway Street, Suite 201
Cheyenne, WY, 82001
http://www.upliftwy.org

Parent Organization
Parent Training and Information Center (PTI)
Parent Information Center
500 W. Lott St., Ste A
Buffalo, WY, 82834
http://www.wpic.org

Protection & Advocacy
Wyoming P&A System
7344 Stockman Street
Cheyenne, WY, 82009
http://www.wypanda.com

Relay Services
(800)877-9975 (V)
(800)877-9965 (TTY); 711 (TTY)
(877)787-0503 (Speech to Speech)

Special Format Library
(served by Utah)
Utah State Library Division – Program for the Blind and Disabled
250 North 1950 West, Suite A
Salt Lake City, UT, 84116-7901
http://blindlibrary.utah.gov

Special Health Care Needs
Children’s Special Health Program
Wyoming Department of Health
401 Hathaway Bldg
Cheyenne, WY, 82002
(866) 571-0944/(307) 777-7656
https://health.wyo.gov/publichealth/mch/index-4/
Family Voices
504 E. Hancock
Laramie, WY, 82072
http://www.Familyvoices.org

Speech, Language, & Hearing
Wyoming Speech-Language-Hearing Association
2480 E. Park Avenue
Laramie, WY, 82070
http://www.wyomingspeechlanguagehearingassociation.org/

Transition Services
Wyoming Department of Work Services
320 W. Main
Riverton, WY, 82501
Check website for local offices
http://wyomingworkforce.org/workers/vr/

UCEDD
Wyoming Institute for Disabilities
University of Wyoming, Dept. 4298
1000 E. University Avenue
Laramie, WY, 82071
http://wind.uwyo.edu/

Vocational Rehabilitation
Division of Vocational Rehabilitation
Department of Workforce Services
122 W. 25th Street
1100 Herschler Building, 1 East
Cheyenne, WY, 82002
http://www.wyomingworkforce.org/

Other
Easter Seals Northern Rocky Mountain
991 Joe Street
Sheridan, WY, 82801
http://www.easterseals.com/esgw/connect-locally/
RENEW – Rehabilitation Enterprises of North Eastern Wyoming
1969 S. Sheridan Avenue
Sheridan, WY, 82801
http://www.renew-wyo.com

Australia

Cally Bauman

Australia/New Zealand

My name is Cally Bauman and I am a regional representative for both Australia and New Zealand. My daughter, Amélie is 14 years old and was diagnosed with the deletion form of SMS, when she was 3 years old. I have been a member of PRISMS since 2009 and a regional representative since 2014. I am also the chairperson for Smith-Magenis Syndrome Australia (http://smsaustralia.org.au), an international partner of PRISMS.

PRISMS has enabled the connection of our family to an international community of families and specialists and provided us with an invaluable wealth of information which aids us in understanding our ‘SMS journey’. It is my hope as a regional representative to assist local families to build connection and locate resources and support close to them (e.g. navigating the NDIS, Camp Breakaway etc.).

Please connect with me if you are looking for information, interaction with other families or would just appreciate an understanding ear!

Email: au*******@*******ms.org

Brazil

Eliane Barros

Brazil

We are a Family from Brazil, specifically Rio de Janeiro. My name is Eliane and I’m Lucas’ mother. Lucas has a sister, Barbara, and a stepfather, Tiago. We also have a dog called Dom.

In 2012, Lucas was diagnosed with SMS and we became a member of PRISMS. Even being from Brazil, PRISMS was the first one who taught us about the syndrome and who gave us support in the first moment showing us all the happiness that our children give us. Luke brought to our lives values, discoveries, joys and made us strong people. Our days are like a roller coaster, some days are calm, but other are hurricanes. We are learning continuously.
Therapies, regular school with inclusion and special school are part of our routine. We need to reconcile our work with personal life. Often going to work without sleep … Melatonin has helped a lot. I am an engineer and my husband is a teacher.

Our daughter would like to do oceanography. And our dear Lucas would like to be a Fireman as he always says! Lucas is outstanding. Observer and intelligent. And with a big sense of humor. He loves music and dance, but often has explosions that make us very sad. I hope these explosions could stop one day. He is 8 years old and likes Angry Birds, Avengers and birthday parties. Now, I cannot imagine our lives without Lucas. Each of us have so much love for him!

He teaches us every day with his innocence and unconditional love.

I’m thankful for being part of SMS family and PRISMS member.

Email: br****@*******ms.org

Canada

Debbie Brooks

Canada (ON)

My name is Debbie Brooks. I am a teacher and a mother of two girls. My younger daughter was diagnosed with SMS in 2016, just before her fourteenth birthday. As soon as I received her daughter’s diagnosis, I read everything I could find about SMS. I found the PRISMS website to be a great source of information. My family, daughter’s grandparents and daughter’s school teacher were fortunate to able to attend a PRISMS conference a few months after we receiving my daughter’s diagnosis. I loved meeting other individuals with SMS and their families, and I didn’t feel alone anymore.

As a teacher, I am familiar with IEPs and the IPRC process. Although my daughter was not diagnosed until she was almost 14, I have been dealing with SMS for many years has experience with a wide variety of community resources. I look forward to sharing what I have learned through my own experiences with a special needs child in Canada and meeting new families.

Email: ca****@*******ms.org

Amanda Downey

Canada (BC,AB,SK,MB)

My name is Amanda Downey and I live in Fort McMurray, Alberta, Canada. I am a PRISMS Regional Representative for Canada. My husband and I have been members of PRISMS since we received our daughter’s diagnosis four years ago. I am a freelance graphic designer and my husband, Brian, works in the oil industry. We have three children, two boys 14 and 12 and a daughter, 10. Our daughter, Finleigh, was diagnosed with Smith-Magenis Syndrome when she was six years old. She loves taking things apart, her iPad, and all things pink and purple. You can read more about me in my long neglected blog, http://onedayatatime-am.blogspot.ca.

Email: ca****@*******ms.org

Israel

Noémie Grebler

Israel

Noémie Grebler, Regional Representative for Israel
My name is Noémie. I am a French Israeli living in the center of Israel.
Our son, Mael, was diagnosed at 1 year and is 1.5 years now. It was helpful for me to understand there’s a community such as the PRISMS one, and I wish that families of Israel and the middle east could be able to connect as well, share experiences and grow together.
If you wish to be part of a community of already more than 10 families in Israel, do not hesitate to contact me!

Email: is****@*******ms.org

Italy

Sabrina Bisiani

Italy

My name is Sabrina Bisiani. I live in Italy and I’m the President of the Smith Magenis Italia Association. Prisms was my first contact at the moment of diagnose of my little child Federico. We were completely alone and Prisms gave us all the support and information about the Syndrome. After 5 years and a very good job for raising the SMS awareness, 80 families with SMS diagnosed children and young adults have joined our group. A big result thinking about the fact that all of us have thought to be alone in Italy.
Sabrina

Email: it***@*******ms.org

Mexico

Maria Elena Carrancedo

Mexico

Hi my name is Maria Elena Carrancedo. I’m the regional representative of Mexico. I have been a member of PRISMS for around 10 years. I have a daughter with SMS, her name is Mariel and she is 18. She was diagnosed when she was 2 years old. I have another daughter who is 16. We live in Mexico City.

Email: me****@*******ms.org

New Zealand

Cally Bauman

Australia/New Zealand

Please connect with me if you are looking for information, interaction with other families or would just appreciate an understanding ear!

Email: ne********@*******ms.org

Puerto Rico

Sheila Herndandez-Vale

Puerto Rico

Hello! My name is Sheila Hernandez and I am happy to be your Regional Representative for Puerto Rico and Caribbean, also Spanish communities and cities.

My son, Joaquin Rodrigo Gonzales, was diagnosed with SMS at age two and is now five years old. PRISMS is the first website that we looked at when we received his diagnosis. The information shared on the website and newsletter has been most helpful. We appreciated the support we received and as a result, I decided to be a representative a year ago.

My goal is to support the families when that have a SMS diagnosis and to create a network that will enable us to meet and discuss experiences regarding therapist, local Department of Special Education, and to share the medical specialists that we currently use for Joaquin. I feel that it is important for us to be able to talk, listen and learn together as a SMS family.

Email: pu********@*******ms.org

Romania

Roxana Dragan

Romania

My name is Roxana Dragan and I live together with my family in Romania/ Constanta city (Eastern Europe). We are parents for two amazing girls, Riana – 14 and Iulia – 23. Our eldest is an aviation engineer. We found out during the summer of 2023 that our youngest daughter, Riana, has Smith-Magenis Syndrome. She is 14 years old and she always was a bit different than other kids at her age.

After receiving the genetic analysis result, we finally were able to understand and put together all the symptoms. As Regional Representative of PRISMS, in Romania, I’ll answer every question that parents or families have and I will support you and be next to you every time you need. Together we can move mountains and we can help our children to deal with their genetic heritage.

Email: ro*****@*******ms.org

Russia

Bela Kafengauz & Alexander Tzetlin

Russia

We are Bela Kafengauz and Alexander Tzetlin, we live in Moscow and represent PRISMS in Russia. Our eldest daughter Sophia was born in 1984, at the time when Smith Magenis Syndrome was yet to receive it’s name. When Sophia began to develop atypically, no one could tell us what was wrong. We were seeking help from numerous specialists up until 1997, when we were able to send her blood sample for FISH analysis to Canada. Most likely, Sophia was the first person diagnosed with SMS in Russia.

Sophia is 35 years old now. She lives with us, she can read, write, uses computer and smartphone. She is very sociable and her biggest hobby is talking to other people and learning more about their lives. Sophia keeps herself busy – she can talk on the phone, watch TV and listen to music all day long.

Being the first family on the way of raising and educating a child with SMS in Russia was not easy. We wanted to share our experience and make it easier for others. Bela wrote a book about our daughter’s infancy and her preschool and school years, and difficulties that our family had confronted. The book was published in 2008. Later in 2010, we created a website about SMS in Russian http://smith-magenis.ru/ . Over the years a Russian SMS community has gathered, consisting of the Russian families and professionals interested in this syndrome. We are proud to represent PRISMS in Russia and be of help for families like ours.

Email: ru****@*******ms.org

Singapore

Rao Sankar

Singapore

My name is Rao, and I am honored to serve as the regional representative for Singapore. I am also a proud father to my 7-year-old daughter, Geethika, who was diagnosed with the deletion form of Smith-Magenis Syndrome (SMS) at the age of 5.

When Geethika was first diagnosed, we found that her symptoms closely matched those documented in the PRISMS guide for newly diagnosed individuals with SMS. Our journey began with a referral from the doctor who diagnosed Geethika, leading us to PRISMS, where we found invaluable resources and guidance.

I have been a member of PRISMS since 2022, actively following updates and references provided by the organization. I have also registered Geethika in the SMS Patient Registry Portal, where I contribute updates to support ongoing research and the search for potential treatments.

Being part of the PRISMS community has been incredibly enriching, allowing me to learn from and share experiences with other families. I am committed to supporting families in the APAC region who are navigating life with SMS.

Please feel free to connect with me if you need information or simply want to chat and learn more about SMS. I understand the challenges that come with a rare syndrome diagnosis, and I am here to offer support and share the wealth of information and resources available through PRISMS.

Email: si*******@*******ms.org

United Kingdom

Mick Pearson

United Kingdom

Mick is the regional representative for PRISMS in the United Kingdom. He is also a trustee to the Smith Magenis Syndrome UK Foundation. He is very proactive within the foundation giving support and life experiences to families new and old. Mick’s drive is to support families newly diagnosed with Smith-Magenis Syndrome and seeks to connect with them in his unique way.

Mick also supports dads living with Smith-Magenis Syndrome and assists in helping them to connect with each other, he is also keen to promote awareness and fundraising for children and adults with Smith-Magenis Syndrome. His son Riley was born in 2011 and diagnosed in 2014.

Email: un***********@*******ms.org

Regional Resources

PRISMS Regional Representatives & Resources

Jill Wood

Alabama Resources

Amanda Collins

Alaska Resources

Patty Loyer

Arizona Resources

Abby Bell

Arkansas Resources

Charlene Liao

Trevor Gritman

Laurie Bellet

Diane Erth

California SMS Clinic

San Diego

Pediatric Neurology/Smith-Magenis Clinic

California Resources

Eric and Kim Hoffman

Colorado Resources

Leah Baigell

Glen & Kristine Braden

Connecticut Resources

Linda Johnson

Delaware Resources

Allison Leatzow

Florida Resources

Amy Myers

Georgia Resources

Kara Bale

Hawaii Resources

Maria Feagin

Idaho Resources

Denien Rasmussen

Kevin O’Connor

Illinois SMS Clinic

Chicago

Smith-Magenis Clinic

Illinois Resources

FIRST THING TO DO: SIGN UP FOR PUNS

Brooke Widmer

Indiana Resources

Natasha Schaller

Iowa Resources

Natasha Schaller

Kansas Resources

Jean Bishop

Kentucky Resources

Heather Boney

Ashton Cheramie

Kim Wirth

Louisiana Resources

Leah Baigell

Maine Resources

Laura Russell

Maryland Resources

Leah Baigell

Massachusetts SMS Clinic

Lexington (Greater Boston)

Lurie Center for Autism

Massachusetts Resources

Michele Zdanowski

Sherry Thompson

Michigan Resources

Carissa Le

Minnesota Resources

Kim Wirth

Mississippi Resources

Bernadette Huston

Missouri Resources

Marni Rolston

Montana Resources

Patty Loyer

Nebraska Resources

Nevada Resources

Leah Baigell

New Hampshire Resources

Randi Tanenbaum

Ilse Ciprich

New Jersey Resources