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
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 [...]
BATTEN DISEASE AWARENESS DAY T-SHIRTS ARE HERE!
The 2025 International Batten Disease Awareness Day T-shirts are here! You can purchase them separately or while signing up for the Virtual 5K on June 9 and creating your own fundraising page. T-shirts are available to U.S. families only. You may choose to have your own individual fundraising page and/or create a TEAM fundraising page and serve as the team captain. Click below to learn more and purchase! Purchase Here Donate Today and Make a Difference
