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
APRIL 2025 NEWSLETTER | The Illuminator From BDSRA
April 2025 Volume 36, Issue 4 Prepare for Conference & Batten Awareness Day! INTERNATIONAL BATTEN DISEASE AWARENESS DAY IS JUNE 9! As June 9 approaches, I’m reminded [...]
Batten Disease Research Updates with Dr. Ineka Whiteman | April 2025
It's time for Batten disease research updates! BDSRA Foundation's Head of Research & Medical Affairs, Dr. Ineka Whiteman, breaks down Batten disease clinical program updates, research news, and resources in her monthly column, as seen in BDSRA's monthly newsletter, The Illuminator. CLINICAL PROGRAM UPDATES Clinical Trial Tracker Keep up-to-date with the latest clinical trial and natural history study news with our Clinical Studies Chart on BDSRA's website. Check it out by clicking here. Tern Therapeutics Receives US [...]