By: Brandon Daniel, PRISMS Board President

It is hard to believe it has been 30 years since the founding of PRISMS! In some ways that seems like a long time ago and in other ways it does not seem that long ago at all. When I think of PRISMS, I think about my first connection to this organization which now has become a valuable resource to our family and so many others as we continue our journey with Smith-Magenis Syndrome (SMS).

It was 16 years ago, we were grasping to determine what condition our newborn son was dealing with. Several doctor’s appointments and visits to genetic counselors yielded very little success in determining our son’s diagnosis. We had no answers. My wife’s motherly intuition and persistent research of our son’s symptoms led her to find the PRISMS website during the summer of 2007. Based upon the information found on the PRISMS website, my wife knew instantly our son’s diagnosis. All that was left was officially verifying this diagnosis (which we did) and we have been a part of the SMS community and PRISMS ever since. Our family and so many others owe a debt of gratitude to the founding trailblazers of PRISMS that created this wonderful organization some 14 years prior to our diagnosis.

The PRISMS founders’ selfless work to create something greater than themselves has benefited so many families since 1993. I sometimes think, what if PRISMS had not been established? Where would our SMS community be today? How would families live with SMS without this valuable resource and organization to bring our community together? I also think about all those families that were living with SMS prior to 1993 and coping daily with the challenges of SMS without an organization and community to support them. My heart goes out to those families as I can only imagine the struggles they faced without the support and knowledge of an entire community.

As a board member of PRISMS, our goal and mission have not changed since 1993. It is to ensure that the PRISMS organization continues to grow and remain sustainable to serve families within the SMS community for the next 30 years and beyond. Since day one in February 1993, PRISMS has been 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.

The PRISMS journey is ongoing as new families receive their diagnosis and join our community each year. The PRISMS mission continues with the help and support of countless volunteers and donors that support the PRISMS mission. Without today’s volunteers, families and donors, we could not continue this mission. On behalf of the PRISMS Board of Directors, thank you for your ongoing commitment and financial support of PRISMS! Here is to the next 30 years!

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