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
MARCH 2026 NEWSLETTER | The Illuminator From BDSRA
March 2026 Volume 37, Issue 3 ANNUAL FAMILY CONFERENCE (JULY 10-12, 2026 IN CHICAGO, IL) Watch your email and our social media channels for updates on hotel room and conference registration. [...]
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 [...]
