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
JANUARY 2025 NEWSLETTER | The Illuminator From BDSRA
January 2025 Volume 36, Issue 1 There's LOTS to catch up on! Register for Upcoming Events! Lots of virtual events are on the horizon! View the list below and scroll down to the "Upcoming Events" section to learn more about [...]
Batten Disease Research Updates with Dr. Ineka Whiteman | January 2025
It's time for the first Batten disease research updates of 2025! BDSRA Foundation's Head of Research & Medical Affairs Dr. Ineka Whiteman breaks down Batten disease clinical program updates, research news & opportunities, and resources in her monthly column, as seen in BDSRA's monthly newsletter, The Illuminator. The Power of Family Involvement in Batten Disease Research In Batten disease research, as with other rare diseases, true progress is best achieved when patients and families are at the [...]
