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
FEBRUARY/MARCH 2025 NEWSLETTER | The Illuminator From BDSRA
February/March 2025 Volume 36, Issue 2-3 BIG RESEARCH NEWS! Congratulations to the BDGRI Research Grant Recipients! The recipients of the Batten Disease Global Research Initiative inaugural Research Grant round were announced on March 18, 2025. Learn more about the recipients and [...]
Reserve Your Hotel Room(s) for the 2025 Annual Family Conference!
RESERVE YOUR HOTEL ROOM IN LINCOLN, NEBRASKA! The hotel room block for this year's Annual Family Conference is open! Reserve your room(s) today and join us in Lincoln, Nebraska in July. The conference will take place at the Lincoln Marriott Cornhusker Hotel from July 11-13. Pre-conference activities will be held on Thursday, July 10. Click the button below to book your hotel room(s)! Book now Apply for a Conference Grant U.S. and Canadian families may apply [...]
