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

AUGUST 2025 NEWSLETTER | The Illuminator From BDSRA

September 3rd, 2025|

  August 2025                                                                                                 Volume 36, Issue 8 2026 CONFERENCE NEWS & ANNOUNCEMENTS   2026 CONFERENCE LOCATION UNVEILED As our conference attendees found out during July’s conference, WE ARE HEADED TO CHICAGO [...]

EOIs NOW OPEN ➡️ BDGRI 2025-26 Grant Round

August 20th, 2025|

  Expressions of Interest are now open for the 2025-26 Grant Round from the Batten Disease Global Research Initiative! Read the full guidelines and information for applicants, and learn more about the BDGRI by clicking below!  Visit the BDGRI website  

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