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
ONE MONTH AWAY! (View the Conference Agenda)
We are ONE MONTH AWAY from Day 1 of the Annual Family Conference! June 17 is the deadline for reserving hotel rooms, ordering T-shirts, and registering for SIBs and Life Goes On outings. The Newly Diagnosed & First-Time Conference Attendee Orientation is also on June 17! Also...THE AGENDA IS NOW AVAILABLE! Click the "Conference Info" button below to view the agenda and register for the Conference, and register for the Orientation by clicking the "June 17 Orientation" [...]
MAY 2025 NEWSLETTER | The Illuminator From BDSRA
May 2025 Volume 36, Issue 5 IT'S ALMOST BATTEN AWARENESS DAY & CONFERENCE TIME! INTERNATIONAL BATTEN DISEASE AWARENESS DAY IS JUNE 9! There is something for [...]
