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
Batten Disease: Rare Disease Week 2026
Click below to learn more about what you can do for the Batten disease and rare disease communities this Rare Disease Week! SHOP There are three current shopping fundraisers that BDSRA will receive proceeds from! Order online from Panda Express on Friday, February 27, 2026 Shop the "Love is Blind" collection from Paper Clouds Apparel by March 4, 2026 Treat yourself to some sweets from See's Candies by March 21, 2026! [...]
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, [...]
