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
Update from the Board
Dear members of our Batten Community, We wanted to provide an update on the many board activities and initiatives in the last few months. The Tragic loss of Larry McDonough was a most saddening moment for our entire community. Larry was a cherished pillar of the Batten Community for decades, serving on the board for many years, working tirelessly to fundraise for the BDSRA, volunteering on the Conference Committee this year, and volunteering to lead the 2027 [...]
We need your expertise and input in planning for the future of the BDSRA!
The BDSRA Board of Directors is actively working on an updated strategic plan and updating the standing and ad hoc Committees of the Board. These committees are a commitment of generally about 2 hours of meetings per month. Joining and participating in a BDSRA Committee is a way for you to be connected, offer your expertise, roll up your sleeves and support the BDSRA Community, without joining the actual BDSRA Board (which requires more meeting time commitment [...]
