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 Families Need Your Support
CLICK HERE TO DONATE TO BDSRA Here's How You Can Help: Prepare for Giving Tuesday with our Guide! What’s a BDSRA project, initiative, or cause you’re passionate about? The Haley’s Heroes Foundation will raise funds on December 3 to sponsor childcare at the 2025 BDSRA Annual Family Conference in Lincoln, Nebraska to help ensure it’ll come at no cost for Batten families. Whatever you’re passionate about, help raise funds for it on December 3rd's Giving Tuesday and through [...]
How Your Gifts Impact the BDSRA Annual Family Conference
The BDSRA Annual Family Conference is a staple with our Batten disease community made possible by our donors. By giving to BDSRA, you help ensure this yearly tradition and the positive impact it has on families, SIBs, bereaved parents, researchers, clinicians, and staff continues. Invest in our Mission Other Ways to Give Did you know you can give to the BDSRA Foundation with a qualified charitable distribution (QCD)? Also known as an IRA distribution, a QCD [...]
