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 2026 NEWSLETTER | The Illuminator From BDSRA
February 2026 Volume 37, Issue 2 RARE DISEASE WEEK RECAP We continue to recognize, stand with, and advocate for the over 300,000,000 people worldwide living with a rare disease, especially our [...]
Batten Disease Research Updates with Dr. Ineka Whiteman | February 2026
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. CLINICAL PROGRAM UPDATES Clinical studies tracker Keep up to date with the latest clinical trial and natural [...]
