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
How BDSRA Supports Bereaved and Actively Caring Batten Disease Families
The BDSRA Annual Family Conference is a haven for our Batten disease community. It’s where lifelong bonds and friendships are formed and where crucial information is learned. Your gifts to the BDSRA Foundation make the Annual Family Conference possible, so Batten families like Mitch’s won’t be alone on their Batten journey. Join our Batten families in the fight for treatments and a cure for Batten disease. Give Today Ways to Give Or mail a check to: [...]
Batten Disease | BDSRA Foundation Bids Two Board Members Farewell
Darlene Royalty “Darlene has been a valuable source for educating, understanding, and supporting our team at BDSRA. She cares deeply about the Batten community and the organization, and it was at the core of everything she did. To me, that is living the mission, and I am grateful for the five years I have worked with her.” –Amy Fenton Parker, BDSRA Foundation President & CEO Fernanda Leal-Pardinas "Fern, you have brought a wonderful [...]
