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
Latest Batten Disease and BDSRA Fundraiser & Conference News
Shop to benefit BDSRA and the Batten Community! SHOP NOW: Paper Clouds Apparel will donate 50% of profits from the “Love is Blind” Braille collection to the BDSRA Foundation. This collection features the word “Love” Brailled by Daxx, who has CLN3 Batten disease. Shop the Collection Joining us in Chicago for the Conference July 10-12? We need volunteer help for our various conference committees! No prior experience is needed. Click the button below for more details, [...]
JANUARY 2026 NEWSLETTER | The Illuminator From BDSRA
January 2026 Volume 37, Issue 1 CENTER OF EXCELLENCE NEWS The BDSRA Foundation officially announced Boys Town National Research Hospital as the newest site in the Batten Disease Clinical Center of Excellence Program and [...]
