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
Register for Conference & Virtual 5K TODAY!
Research & clinical sessions, FREE childcare, activities for siblings and bereaved Batten parents, and more – the BDSRA Annual Family Conference has something for ALL Batten families. Join us in Lincoln, Nebraska this July by registering today. Register Today The BDSRA Foundation supports Batten families of ALL CLN types. By donating to BDSRA and helping us raise funds, you are making a difference for Batten families battling this devastating disease that has no cure. Join us [...]
Your Story Can Make a Difference | Join the BDSRA Fam Funds Movement
Written by Beth Fries Imagine turning your journey into a powerful force for change. That’s exactly what’s happening with the BDSRA Foundation’s Fam Funds—and the impact has been incredible. In just a short time, 20 Fam Funds have already raised over $20,600 since January 2025 by sharing their stories through social media and email. But this is just the beginning. Our goal? 50 active Fam Funds by June 9th—International Batten Disease Awareness Day. With the support of [...]
