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
HOLIDAY NEWSLETTER | The Illuminator From BDSRA
Holiday Season 2025 Volume 36, Issue 11 NOTE: This is the last edition of The Illuminator Newsletter until the end of January/early February. GIVING SEASON UPDATE Whether you donated, shared our posts, spread the word, etc., you helped make a difference for the Batten disease community by helping us surpass our $2,000 Giving Tuesday goal. [...]
Batten Disease Research Updates with Dr. Ineka Whiteman | Sept-Nov 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 quarterly column, as seen in BDSRA’s monthly newsletter, The Illuminator. With thanks to BDSRA Australia’s Tahmina Tabassum, PhD, for editorial assistance. An Incredible Week of Connection and Learning Image: NCL2025 Congress and BDSRA Australia [...]
