There Are Still No Treatments for Smith-Magenis Syndrome. That’s Why We Walk.

Imagine being told that your child has a rare genetic disorder with no cure, no approved treatments, and few answers about the future.

That is the reality for families living with Smith-Magenis Syndrome (SMS).

SMS is a complex genetic disorder that can cause significant developmental and cognitive challenges, sleep disturbances, speech and communication difficulties, behavioral challenges, and a range of physical and medical complications. Many of these challenges are lifelong and can make everyday life incredibly difficult for those with SMS and their families.

And today, there are still no approved treatments specifically for SMS.

That’s why we walk.

The SMS Research Foundation funds research to better understand SMS, identify potential treatments, and ultimately develop therapies that can improve the lives of people living with the syndrome. The money raised through the Steps Move Science Walk goes directly toward advancing this critical research. For families like ours, research isn't just science—it is hope for a better future.

Why We Walk for Marni

Our daughter Marni was diagnosed with SMS in 2021 at just four years old, after a long and difficult search for answers.

Marni faces challenges every day, but she meets them with incredible energy, joy, curiosity, and love. She loves to swim, read, and connect with everyone she meets. If you know Marni, she probably knows your birthday, your pet’s name, and your favorite color!

Since her diagnosis, our family has become deeply involved in the SMS community—raising money for research, spreading awareness, and supporting other families on this journey.

We walk because Marni deserves more than managing the challenges of SMS. She deserves the chance to benefit from treatments designed specifically for her condition.

We walk for Marni. We walk for the thousands of people living with SMS today. And we walk for the families who will receive an SMS diagnosis tomorrow.

Every step moves science forward. Every dollar brings us closer to a treatment. And every donation gives us hope.