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
SEPTEMBER 2025 NEWSLETTER | The Illuminator From BDSRA
September 2025 Volume 36, Issue 9 CENTER OF EXCELLENCE NEWS & CONFERENCE RECORDINGS Read the Full Press Release Conference Presentations are on YouTube! View sessions from the 2025 Annual Family Conference in Lincoln, [...]
PUBLICATION ALERT: Batten Disease Research Goals Published in The Lancet Neurology
In 2024, recognizing the urgent need to establish research priorities across the basic, translational, and clinical sciences to tackle the most pressing concerns of the Batten disease community, the Batten Disease Clinical Research Consortium (BDCRC) was established. This U.S. academic network is designed to serve as a collaborative framework to advance clinical research in Batten disease. Led by Kennedy Krieger Institute (MD) and the BDSRA Foundation, a Priority Setting Partnership gathered community input to identify top research [...]
