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
NEW BATTEN DISEASE FUNDRAISER ALERT…🍀👀
This St. Patrick’s Day, we invite you to participate in one of the simplest and most enjoyable fundraisers you’ll ever attend — because you don’t have to attend at all. 🍀🌈 This No-Show St. Patrick’s Day Dinner Fundraiser supports the important work of the BDSRA Foundation. Instead of purchasing a ticket for an event, we invite you to stay home, enjoy your evening, and consider donating an amount equal to what you might normally spend on dinner [...]
FEBRUARY 2026 NEWSLETTER | The Illuminator From BDSRA
February 2026 Volume 37, Issue 2 RARE DISEASE WEEK RECAP We continue to recognize, stand with, and advocate for the over 300,000,000 people worldwide living with a rare disease, especially our [...]
