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.

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RECENT NEWS

News Coverage Spotlights BDSRA Conference and Batten Disease

July 12th, 2025|

THANK YOU to 10/11 News and News Channel Nebraska for spotlighting the BDSRA Annual Family Conference and local families affected by Batten disease! Watch/read their coverage below! Batten Disease is a rare, fatal genetic disorder affecting children. The foundation that raises awareness for the condition is hosting its conference in Lincoln, which represents a big moment for local families like the Thoenes. Full Story: https://t.co/2iBqr8fply pic.twitter.com/A49KbAnGJy — News Channel Nebraska (@NewsChannelNE) [...]

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