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
Batten Disease Research Updates with Dr. Ineka Whiteman | Post-April Illuminator Edition
It's time for research updates! 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. (Note: this Post-April edition was published after the April edition of The Illuminator and therefore was not inlcuded in the newsletter). As I reflect on recent months (and sit down long enough to catch my breath and [...]
DEADLINE: Order Batten Awareness Day T-Shirts By THIS SUNDAY!
If you haven't purchased your International Batten Disease Awareness Day T-shirt(s) yet, you have until 11:59 p.m. EDT on Sunday, May 12 to do so! Order one by registering for the virtual 5K and creating your fundraising page or purchasing one separately. Click the button below to order your T-shirt and learn more about how you can advocate leading up to International Batten Disease Awareness Day on June 9th. For any questions, please reach out to support@bdsrafoundation.org. [...]
