August 19, 2026 11:02 am
Published by Bob Robinson
https://secure.qgiv.com/event/virtualwalk2026 We are living through an extraordinary period in neurodevelopmental research. New genetic technologies are advancing, therapies for other rare... Read More
June 24, 2026 10:46 am
Published by Bob Robinson
Building on the current foundation of SMS research and as part of our 5-Year Research Roadmap we are funding a... Read More
June 24, 2026 10:31 am
Published by Bob Robinson
Building on the current foundation of SMS research and as part of our 5-Year Research Roadmap we are funding a... Read More
June 17, 2026 6:12 pm
Published by Bob Robinson
Researchers wanted to better understand how the body controls RAI1 protein levels inside cells. They discovered that another protein, called... Read More
June 17, 2026 6:09 pm
Published by Bob Robinson
In this study, scientists used stem-cell technology to create laboratory models of human brain development from individuals with SMS. They... Read More
May 20, 2026 10:23 am
Published by Bob Robinson
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
May 12, 2026 5:52 pm
Published by Bob Robinson
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