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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JULY 2025 NEWSLETTER | The Illuminator From BDSRA

July 31st, 2025|

  July 2025                                                                                                      Volume 36, Issue 7 Conference Recap   Another BDSRA Annual Family Conference is in the books! THANK YOU to everyone who traveled to Lincoln, Nebraska, [...]

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