ABOUT
PRISMS
BACKGROUND INFORMATION
Who We Are
Organized and incorporated in the state of Virginia on February 4, 1993, PRISMS, Inc. is governed by a Board of Directors. Most board members have children with Smith-Magenis syndrome. Board members serve three-year terms and may serve additional consecutive terms. Several members of the Board of Directors also serve as corporate officers. These individuals are responsible for directing the organization’s operations and serving the SMS community. In addition, PRISMS works closely with a multidisciplinary Professional Advisory Board that provides medical guidance and reviews research proposals.
On May 4, 2000, the IRS declared PRISMS a 501c(3) non-profit organization. Our Federal Tax Identification Number is 54-1652029. We file an IRS Form 990 every year. This form is available for public inspection at GuideStar.org or upon request.
Our Mission
PRISMS is dedicated to providing information and support to families of persons with Smith-Magenis Syndrome (SMS), sponsoring research and fostering partnerships with professionals to increase awareness and understanding of SMS.
Our Vision
PRISMS is a leader of the Smith-Magenis Syndrome community and engages, inspires and supports families, physicians, educators, researchers, and others so they can improve the lives of everyone affected by SMS.
Our Values
COMPASSIONATE
We are a compassionate organization that cares deeply about the well-being and the needs of each and every individual within the SMS community.
EMPOWERING
We empower families with the knowledge they need to make the best decisions for their family’s needs.
CONSCIENTIOUS
We are conscientious in ensuring that all our actions and practices serve the needs of the SMS community.
INCLUSIVE
We encourage and seek participation from all those interested in advocating for and creating a positive impact on the SMS community.
EXCELLENCE
We focus on quality, conducting our work to the highest ethical and professional standards, and strive for excellence in all that we do.
Our Goals
- Be a global organization
- Be the “go-to knowledge center” for all things SMS
- Ensure that all actions taken by PRISMS are grounded in the best available knowledge
- Ensure that those impacted by SMS have the resources and opportunity to achieve their fullest potential
- Be a sustainable organization
Quick Facts About SMS
Smith-Magenis syndrome is a rare (between 1 in 15,000 to 25,000) neurodevelopmental disorder characterized by the following:
- A well-defined pattern of craniofacial and skeletal anomalies
- Expressive speech/language delay
- Middle ear dysfunction
- Sleep-wake abnormalities
- Elevated daytime melatonin
- Cognitive impairment with behavioral and psychiatric symptoms
Most SMS cases are due to a common 3.7 Mb interstitial deletion of chromosome 17p11.2 that includes the retinoic acid induced 1 (RAI1) gene. However, approximately 10% of cases without deletion result from a heterozygous de novo mutation within the RAI1 gene. Common behavioral problems for affecting those with SMS:
- Hyperactivity and attention problems
- Impulsivity
- Mood lability
- Explosive outbursts/tantrums (often due to changes in routine)
- Anxiety
- Aggression
- Other maladaptive, autistic-like and self-injurious behaviors
Connect With Us
CONTACT INFORMATION
STAFF CONTACT
Michelle Larscheid
Executive Director
mlarscheid@prisms.org