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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FEBRUARY/MARCH 2025 NEWSLETTER | The Illuminator From BDSRA

April 1st, 2025|

  February/March 2025                                                                        Volume 36, Issue 2-3 BIG RESEARCH NEWS!   Congratulations to the BDGRI Research Grant Recipients! The recipients of the Batten Disease Global Research Initiative inaugural Research Grant round were announced on March 18, 2025. Learn more about the recipients and [...]

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