Last year, I asked friends, family, and colleagues to join me in supporting research for Smith-Magenis syndrome (SMS), a rare genetic disorder for which there are currently no treatments that address the underlying cause.
Today, I have even more reason to be hopeful.
Over the past year, I have had the privilege of seeing firsthand the progress being made by researchers studying SMS. Scientists are gaining a better understanding of RAI1, the gene at the center of SMS, and exploring new approaches that could one day lead to treatments that address the disorder at its source.
Building on that progress, the SMS Research Foundation has launched a 5-Year Research Roadmap. Simply put, it is our plan for taking promising science and moving it closer to treatments for people with SMS. It identifies the research, partnerships, and clinical-trial preparation that need to happen over the next five years, with an ambitious goal: help move SMS toward a first disease-modifying clinical trial by 2030.
That's what makes this year's Steps Move Science Walk especially important to me.
I've created a team again this year, and I'm asking my friends, family, and colleagues to help. You don't have to know someone with SMS to make a difference. You can join our team, help introduce others to this little-known disorder, or donate to support the research.
Every team created raises awareness. Every story shared introduces someone new to SMS. And every dollar raised helps fund the science needed to move promising discoveries closer to treatments.
There is still a great deal of work ahead, and there are no guarantees in research. But today there is a clearer path forward—and an SMS community determined to pursue it.
I'm asking you to help us take the next steps.
Please consider joining my team or making a gift to my Steps Move Science 2026 campaign. Your support will help us continue moving research forward and building a better future for individuals and families living with SMS.
Thank you for being part of this with me.
About Smith-Magenis Syndrome
Smith-Magenis syndrome (SMS) is a rare genetic disorder that can affect development, learning, behavior, sleep, and multiple body systems. It is most often caused by a deletion on chromosome 17 that includes RAI1, an important gene involved in neurological development and function.
SMS is estimated to occur in approximately 1 in 15,000 to 25,000 births and remains underdiagnosed. There are currently no approved treatments that address its underlying cause. That's what we're working to change.