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 Boys Town National Research Hospital as New Site in Clinical Centers of Excellence Program; Two Sites Earn CoE Promotions
GAHANNA, OH (January 29, 2026) – The Batten Disease Support, Research, and Advocacy (BDSRA) Foundation has officially announced Boys Town National Research Hospital as the newest site in the Batten Disease Clinical Center of Excellence Program and the promotion of NYU Langone Health and UNC Hospitals from “Affiliate Centers” to “Centers of Excellence.” Boys Town National Research Hospital, in Boys Town, Nebraska, has been awarded a Batten Disease Center of Excellence “Affiliate Center” designation, becoming the 11th [...]
FINAL CALL: 2026 Conference Theme Ideas
It's the final call for theme ideas for the 2026 BDSRA Annual Family Conference! If you haven’t already, mark your calendars for July 10-12 at the Westin Chicago Lombard for this year's Conference! What do YOU think this year’s Conference theme should be? Email your idea(s) to patrick@bdsrafoundation.org!
