For years, families living with Smith Magenis Syndrome have waited for more than symptom management—for a path toward treatments that address the biology of SMS itself. Today, that path is beginning to emerge. Our new Spring Appeal shares why this moment in SMS research is different, how advances centered around the RAI1 gene are creating new possibilities, and why the next several years could be transformational for the SMS community. This is a moment where science, urgency, and opportunity are converging—and what we do now matters.
Read our full letter here and learn how you can help accelerate the future of SMS research. Read More
At the SMSRF, our research strategy is built around one goal: turning strong science into meaningful impact for individuals living with SMS and their families. Because SMS biology is complex, and because families deserve progress that is both real and durable, we focus on supporting work that is scientifically rigorous, strategically chosen, and aligned with a clear long-term path toward therapies. Read More
Fifteen years ago, the Smith-Magenis Syndrome Research Foundation was founded on the belief that families, clinicians, and researchers working together could move the science forward and improve the lives of individuals living with Smith-Magenis syndrome. For many of us, this mission is deeply personal, shaped by the daily realities of loving and supporting someone with SMS. Read More
As a founding member of the SAP, Chris has been instrumental in shaping the Foundation’s scientific vision and guiding its... Read More
We are pleased to announce that, following an extensive search process led by our Board of Directors, Bob Robinson has... Read More
McGill University–supported Professor Dr. Wei-Hsiang Huang has just received a $1,025,100 five-year grant from the Canadian Institutes of Health Research to continue his groundbreaking SMS research.... Read More
Two World-Class Institutions, One Goal: A Breakthrough for Smith-Magenis SyndromeDr. Wei-Hsiang Huang (McGill University) and Dr. Xiaojing Gao (Stanford University)... Read More
After an extensive search process, led by members of the Board of Directors, we are pleased to announce that Angela Weaver has been selected as Executive Director, beginning January 2023.
A new project kicks off at the University of Michigan.
The Smith Magenis Research Foundation is excited to announce our continued support at McGill University for Dr. Wei-Huang’s newest project.
