PRISMS exists to empower you with valid information shared by professionals and parents who have stood where you stand and are ready to offer support.
For the Parent/Caregiver
Finding out that your child has a genetic condition can be extremely challenging. The diagnosis can seem overwhelming, filling you with uncertainty and dread for the future. You are embarking on a difficult journey, but one that is also rewarding. Life does not stop with the diagnosis of Smith-Magenis syndrome (SMS). Life will be different, but not without many of the same joys and challenges that all parents feel in their children’s lives.
You will learn that children and adults with SMS pose many developmental and behavioral challenges. As a parent/caregiver, you will encounter difficult times, but also times that are joyful, humorous, and never boring.
On this website, you will find many resources to help you better understand your child and get the support you need to help guide them to their fullest potential.
You are not alone!
Resources for You
You are not alone. PRISMS offers a variety of ways for you to connect with other parents and caregivers of individuals with SMS.
We understand it can be overwhelming trying to process the diagnosis, understand a new challenging vocabulary, and come to terms with the ways in which this diagnosis will affect you, your loved one, and your family.
Children with Smith-Magenis syndrome typically face delays in specific development areas. Early intervention is highly recommended and has proven successful for many individuals with SMS and their families.
Living With SMS
From Behavior and Sleep to Medical Management and Guardianship, there are a variety of factors to consider and educate yourself on when it comes to your loved one with Smith-Magenis syndrome.
It can be important to share information on Smith-Magenis syndrome with your local community such as the physicians, educators, and family who interact with your child or adult with Smith-Magenis syndrome regularly. PRISMS offers awareness tools to help.
Be a Part of Research
Research leads to answers. You and your loved one with SMS can help to advance research for the community by participating in one of our active research opportunities.
Attend the Conference
PRISMS hosts a biennial conference for the SMS community complete with opportunities to network and share with other families and engage and learn from professionals and researchers from around the world.
Quotes from Parents/Caregivers
“ I encourage you to go to a PRISMS conference or connect with PRISMS via FREE membership. The support you’ll find here is vital. Things are very hard when you are raising a child with SMS. Those hard times will pass, and you will be able to enjoy your child. I never believed this when my child was young, even though people told me it would get better. I just couldn’t see how. I’m here to tell you today, it has gotten better. You can do this!”
– SMS Mom, SC