PRISMS was founded in 1993 by parents Margaret and Scott Miller, and genetic counselors Brenda Finucane and Ann C.M. Smith.
The first steps in crafting the organization began at a kitchen table, with modest intentions, and the uncertainty of how they might make an impact and reach out to other families. But they, (the founders), understood that parents and professionals needed to work together in an effort to provide hope and support for families of persons diagnosed with Smith-Magenis syndrome. This partnership of four adults and a tiny baby forged what would become PRISMS, Inc.
Margaret and Scott’s daughter’s diagnosis:
She was diagnosed in 1990. She was six-months-old, and she was the 30th case in the world known at that time. It was just so profound to find out something that we couldn’t even imagine planning for. The geneticist who gave us the diagnosis had not heard of it himself and offered us nothing. No information and no hope. He started to talk to us about residential placements, and she was a six-month-old baby sitting on my lap. In my head, I remember thinking, ‘Why is he talking about that? You just slayed me. I have this baby in front of me.’ I just wanted him to shut up. I couldn’t go home and Google it. We didn’t have Google back then. I remember every detail of the day. I had to go to work after that, and I said to my husband, ‘Just don’t say anything.’ I gave him the baby and knew that if I even tried to talk, I wouldn’t get through the rest of my day. I had to go work with kids. Typical, healthy, happy kids with able bodies and minds. All you have is a diagnosis. All you have is a syndrome name. What do you do with that? There was one paper written at that time, and it was something out of a science experiment, talking about the features and drastic things. That’s how first papers get written. I was like, ‘How can you hand this to a family? This is what you give them?’ The geneticist wanted us to come back in a few months, and I didn’t. No one’s ever asked me how it felt to get the diagnosis. The diagnosis is like falling off a cliff. You don’t know if you’re going to land, or where it’s going to be, or what it looks like. All I could think is, ‘Why is the world still turning when mine has ended?’
For 25 years, PRISMS has lead the charge in supporting the SMS community through programs and services dedicated to education, awareness, and research. The organization is proud of the legacy our founders and families have created and are honored to continue to have their continued involvement today. PRISMS is working with the global SMS community to build a future of hope. We’ve come a long way from our humble beginnings at a kitchen table, and we have a long way to go, but we have an incredible community to make it happen .
Ann C.M. Smith, MA, DSc (Hon), CGC, Chair Emeritus of PRISMS Professional Advisory Board and Co-Founder of PRISMS
“The early help line was my personal phone number. By 1990, the syndrome had been named Smith-Magenis syndrome, years after we found the deletion. We recognized that if we have one family here who has the question, there are others. There was an impetus to find a network of support to form the early days.”
Maggie Miller, SMS Mom, Co-Founder of PRISMS
“Everybody in the early days of the organization had a role to play. I remember we’d get calls from parents and they were sure we had a 12-story building with five administrators. But it was a kitchen table with a phone. We were writing a brochure. It was very small. But from the small start, the hard work of the many players is why we now see and know all these other families and identify and support more everyday.”
Brenda Finucane, MS, LGC, Professional Advisory Board and Co-Founder of PRISMS
“PRISMS is a beautifully woven tapestry, of which, we all have a thread.”
Jean Bishop, SMS Mom, Host of Annual Nickels for Nico Fundraiser
“PRISMS has become our family outside of our biological family. We got his diagnosis when he was just 14-months old. Right about when he turned two, we went to our first PRISMS conference. We had never met anyone else with the syndrome before. It was very powerful. And getting suggestions with how to prevent behavior and manage everything from medications to sleep, it’s just priceless.”
Tina McGrevy, SMS Mom, Awareness Chair
“The thing that’s great about PRISMS, as parents and researchers, is that we see the families, but we also see the experts, the doctors, the people that have written all these complicated medical articles. They’re here in this room, and you can go up and talk to them. When I go to any other doctor, I have to say, ‘Okay, my son has SMS. This is what it means. Here’s all the paperwork.’ I have to explain the syndrome to them first, and they treat them. Here, in this PRISMS community, they already know. They just get it.”