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
BDSRA Foundation Announces Mount Sinai Health System as New Site in Clinical Centers of Excellence Program
GAHANNA, OH (September 22, 2025) – The BDSRA Foundation has officially announced Mount Sinai Health System as the newest site in the Batten Disease Clinical Center of Excellence Program. “We are delighted to welcome Mount Sinai Health System as the newest Affiliate Center in our Centers of Excellence Program,” said Program Lead Ineka Whiteman, PhD. “This important designation not only expands our national network to 10 participating centers but also strengthens our shared commitment to ensuring families [...]
EVENT: First Carolinas Batten Disease Family Day!
The following is a message from the Carolinas Batten Disease Family Day Organizing Team, UNC Batten Disease Center of Excellence Affiliate, and Duke Pediatric Neurology. Dear Batten community, We are thrilled to invite you to the First Carolinas Batten Disease Family Day! Join us for a day of connection, learning, and support tailored for families, patients, siblings, and professionals dedicated to Batten disease care. Event Details: Date: Saturday, September 20, 2025 Time: 11 AM to 2 PM Location: The [...]
