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
Important Announcement: Building a Stronger Future for BDSRA
January 14, 2026 Dear Community, For 39 years, BDSRA has been dedicated to creating a world without Batten Disease. Our mission is to support Batten families, fund and facilitate research and advocate for treatments and a cure. As we look toward the next chapter of our growth, we are writing to share some important updates regarding our organizational structure. Why We Are Evolving To better serve our community and ensure the long-term sustainability of our programs, the Board [...]
BDSRA 2026 Annual Family Conference | Ideas from Batten Disease Community
Here’s a look back at some of the Annual Family Conference themes over the past four years! We need your ideas!! If you haven’t already, mark your calendars for the 2026 Annual Family Conference for July 10-12 at the Westin Chicago Lombard! As you await further info, what do YOU think this year’s Conference theme should be? Email your idea(s) to patrick@bdsrafoundation.org!
