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
JULY 2025 NEWSLETTER | The Illuminator From BDSRA
July 2025 Volume 36, Issue 7 Conference Recap Another BDSRA Annual Family Conference is in the books! THANK YOU to everyone who traveled to Lincoln, Nebraska, [...]
BDSRA Board of Directors Announcements
At the latest BDSRA Board of Directors meeting in Lincoln, Nebraska, on July 10, the Board of Directors conducted leadership elections. The new board leadership, effective January 2026 (Treasurer role took effect immediately), is: Board Chair – Barbara McDonough Vice Chair – Suzette James Secretary – Gretchen Fieschko Treasurer – Wayne Kiefer Congratulations to all! YOU could become a member of the Board of Directors; applications are open and due [...]
