Parents and Researchers Interested In Smith-Magenis Syndrome

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Development of Caregiver Reported Outcome Measures for NDD

by PRISMS | Sep 23, 2023 | Research Study

The purpose of this study is to develop and validate a disease-specific, observer-reported outcome measure for clinical trials of patients with the following Neurodevelopmental Disorders (NDDs): SYNGAP1 and RAI1 deficiencies (such as SMS), and Fragile X Syndrome. The...
How Do You Host a Fundraiser?

How Do You Host a Fundraiser?

by PRISMS | Aug 29, 2023 | 30th Anniversary, Awareness, SMS Blog, Uncategorized

A Q&A with PRISMS Community Fundraisers By: Jackie Fallenstein – PRISMS Board Member-at-Large One of the ways PRISMS members and friends support our mission is by holding fundraisers in their local communities. In 2022, these fundraisers raised over $60,000 for...
The Power of Partnerships: Driving Rare Disease Research and Education Forward

The Power of Partnerships: Driving Rare Disease Research and Education Forward

by PRISMS | Aug 10, 2023 | 30th Anniversary, From PRISMS, Home Page

Rare diseases like Smith-Magenis syndrome may affect a small number of individuals, but their impact can be devastating. These conditions are characterized by their scarcity, which poses unique challenges for research, diagnosis, and treatment. However, one of the...
Q&A with Regional Representative Patty Loyer

Q&A with Regional Representative Patty Loyer

by PRISMS | Jul 26, 2023 | Awareness, Home Page, SMS Blog

Can you tell us a little bit about yourself, your family, and your SMS individual? I am North Carolina born and raised, transplanted to Arizona since 1996.  I earned a Bachelor of Science degree in elementary education from Appalachian State University and then a...
Welcome PRISMS Board Member Eric Rogers

Welcome PRISMS Board Member Eric Rogers

by PRISMS | Jul 24, 2023 | 30th Anniversary, From PRISMS, Home Page

PRISMS is proud to announce a new addition to the Board of Directors, Eric Rogers. Eric will serve as a Member-At-Large. Eric and his wife Jessica live in Mount Juliet, TN with their son Wyatt (9) who has SMS, and daughter Adelyn (5). Eric attended Cumberland...
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Recent Posts

  • Celebrating Grant Recipients of the Brian Pereira Memorial Fund
  • A Mother’s Determined Advocacy Saves a Much Needed Program From Budget Cuts
  • PRISMS Releases 2024 Annual Report
  • Honoring Brian Pereira: A Champion for Families, Siblings, and the SMS Community
  • A Story of Unexpected Generosity: How One Act of Kindness Changed the Lives of 18 Families

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PRISMS, Parents and Researchers Interested In Smith-Magenis syndrome, is dedicated to providing information and support to families of persons with Smith-Magenis syndrome, sponsoring research, and fostering partnerships with professionals to increase awareness, understanding, and treatment of SMS.

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