Last week at the Boston Globe‘s 2026 Rare Disease Summit, The Arc of Massachusetts Board member Jayme Betts shared the reality of raising a child with Sotos syndrome.
For years, Jayme and her husband had to teach specialists, coordinate care, and fight a system that wasn’t built for them. But Jayme is changing the record. Instead of waiting for the system to catch up, she is building the future herself.
Jayme has been:
- Co-founding the first Sotos syndrome clinic at Mass General Hospital.
- Creating a global data registry to replace outdated, “scary” Google results with real hope.
- Advocating for accessible changing tables in public spaces.
Jayme’s message was clear: Rare disease families shouldn’t have to be their own doctors, data scientists, and architects. Because of her work, the table is being set for better research, better treatment, and a better life for the Sotos community.
We are incredibly proud to have Jayme’s vision and tenacity on our Board of Directors!
