About Us
BDSRA is dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action. Founded in 1987, by parents seeking to build a network for those diagnosed with Batten disease, BDSRA is now the largest support and research organization dedicated to Batten disease in North America. BDSRA believes that to effectively unravel the mysteries of Batten disease, the worlds of medical science, research, and families must work together toward a common goal: discover treatments and cures while assuring a better quality of life for those living with the disease.
Recent News
BDSRA Foundation Announces Children’s National Hospital as 12th Site in Batten Disease Clinical Centers of Excellence Program
GAHANNA, OH (March 24, 2026) – The BDSRA Foundation continues to expand access to expert Batten disease care with Children’s National Hospital in Washington, D.C., officially joining its Batten Disease Clinical Centers of Excellence Program as an Affiliate Center. Children’s National joins a growing network of leading institutions dedicated to delivering coordinated, expert care while advancing research and clinical collaboration. With this addition, the program now includes 12 sites nationwide, comprised of seven Centers of Excellence and five [...]
Batten Disease & BDSRA Fundraising Update
🚨 FINAL CALL 🚨 Support the Batten disease community and the BDSRA Foundation today by purchasing some sweets from See's Candies! Any purchase helps us support Batten families, fund and facilitate research, and advocate for treatments and a cure. Order Now Your Impact Matters Thank you to our donors for delivering a pot of gold! We know times are tough, and you work hard for your money. But know your gifts to the BDSRA Foundation from [...]
