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Reflections on 30 Years of PRISMS

By: Maggie Miller, Vice President PRISMS Board of Directors and Co-Founder, PRISMS

This year PRISMS marks 30 years of serving the Smith-Magenis Syndrome (SMS) community. This wonderful community includes persons with SMS, parents and family members, professionals, and our advocacy partners. What began as a small group of four, has grown into a vast global community that continues to magnify the mission of PRISMS in its outreach and endeavors.

The conception of PRISMS began as a kernel of an idea that came together when my husband, Scott, and I, two parents of a newborn baby girl diagnosed with SMS, had the incredible chance meeting with Ann C.M. Smith, the co-discoverer of SMS, and Brenda Finucane, genetic counselor/researcher. This fortunate meeting sparked a conversation and highlighted the need to create an advocacy group for Smith-Magenis syndrome. At that time, there was no organization in the U.S. solely dedicated to serving the SMS community or raising awareness and furthering the research of this rare disorder. So, the planning began.

We officially organized PRISMS into a non-profit organization with the help of family and a small grant from a local genetic foundation. We had a very short list of known families who had a child diagnosed with SMS and we had no idea if they would respond to our inquiries or agree to join our small group. At the time very little information about SMS was available to parents and not widely shared within the medical community. So it was imperative from the start that this organization, PRISMS, brought together parents and professionals who could learn from one another and work together, united by a common cause. Our goal was, and remains today, to ensure that parents and professionals see each other as “experts”. It is that deep level of respect and collaboration that makes PRISMS stand out from other organizations.

As the PRISMS organization slowly grew, we added a full Board of Directors, made up of PRISMS parents and family members. We also expanded the Professional Advisory Board (PAB), composed of esteemed researchers, physicians, and clinicians. With the addition of these two all-volunteer boards, PRISMS was able to expand its outreach, resources, and programs. PRISMS designed its programs and resources to offer a holistic approach to the challenges of SMS. The diversity of specialists that served (and continue to serve), on the PAB allowed PRISMS to support families in the day-to-day trials across the lifespan of SMS, and offer hope that future research will continue to uncover new findings that will improve treatments and interventions. Supporting research across a broad landscape has facilitated the development of comprehensive resources including our PRISMS website, SMS Medical Management Guidelines, On the Road to Success with SMS: A Smith-Magenis Guidebook for Schools, the PRISMS Clinic and Research Consortium (PCRC), The Adult Living Guidebook, SMS Biorepository, educational family conferences, research symposiums, and the PRISMS Patient Registry. These programs are the direct result of a collaboration between researchers, educators, and parents all working together to achieve valuable outcomes that support persons with SMS.

In addition to research collaboration, it was important to the founders that PRISMS mission also includes the support of families; not just providing information about SMS, but also offering a safe haven for parents to ask questions, share fears and concerns and lean on others who are walking the same path. The Regional Representative program was born out of our desire to ensure our community members were connected. It is staffed with volunteer families across the US and globally. Our Regional Reps are our conduit between PRISMS and its community. They are the soft landing for our families during times of chaos and challenges and reflect the values of the community at large. These selfless parents and siblings provide immeasurable support to our community, (especially our newly diagnosed families), and do so without judgment or opinion but with grace and patience. It is these, often first connections, that welcome people into our community and provide the encouragement and hope PRISMS was founded on.

PRISMS could not have grown into the organization it is today or have been able to sustain its presence in the rare disease space, if it was not for the community that it serves. The support from the SMS community from the early days and through today has inspired PRISMS to expand its programs, forge stronger relationships with Vanda Pharmaceuticals and other industry leaders, create consortiums with other neurodevelopmental researchers and organizations, launch SMS clinics, and maintain a patient registry that is crucial for research. Yet above all, the community support has helped PRISMS create a foundation of strong governance that strives to do all things with excellence, integrity, and progressive planning. With this foundation, we can ensure that the next thirty years we will continue to see great strides in the research of SMS and thus better treatments and brighter days for persons with SMS. Thank you for your ongoing financial support, your time and talents, and for the trust that you have placed in us for thirty years and counting!

PRISMS. With you Then. Now. Always.

If you would like to learn more about how we will be celebrating PRISMS 30th Anniversary, click here.