Prisms

PRISMS provides support to our SMS community in a number of ways in including phone and email support, information sharing newsletters, annual reports, webinars, awareness materials, informational packets, and a shared community Facebook Group for family support. PRISMS also offers guidebooks on topics such as medical management guidelines, constipation, behavior, and residential living. We provide an online store where our community can purchase PRISMS merchandise as well as the book On the Road to Success with SMS.

In 2023, PRISMS continued to support the PCRC PRISMS Clinics and Research Consortium. Clinics within the PCRC provide multi-specialty, comprehensive, and compassionate care for patients with SMS. The clinics provide families an opportunity to receive medical and clinical care and treatment recommendations that they can carry home to their local providers and get answers to their health concerns associated with SMS. PRISMS continued funding of research of Smith-Magneis Syndrome at Baylor College of Medicine with a grant for the Patient Registry. The Patient Registry aims to collect ongoing information about individuals with SMS through an online questionnaire platform. The Clinic Travel Fund reimburses caregivers for expenses associated with travel to and from a SMS clinic. This helps to ensure families will seek out the most qualified care. PRISMS also paid for a Clinic Coordinator for part of the year.

PRISMS uses social media to help spread awareness about Smith-Magenis syndrome. PRISMS makes a push on Rare Disease Day, PRISMS Birthday and SMS Awareness Day. PRISMS utilizes a Regional Representative program as an outreach program comprised of volunteers from SMS families to provide support to those who have been newly diagnosed in their communities.