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

SPRING 2026 NEWSLETTER | The Illuminator From BDSRA

May 15th, 2026|

  Spring 2026                                                                                               Volume 37, Issue 4 ANNUAL FAMILY CONFERENCE (JULY 10-12, 2026 IN CHICAGO, IL) Watch your email and our social media channels for conference updates.      REGISTRATION IS OPEN! [...]

Batten Disease Global Research Initiative Announces 2026 Research Grant Recipients

May 15th, 2026|

FOR IMMEDIATE RELEASE May 15, 2026 Batten Disease Global Research Initiative Announces 2026 Research Grant Recipients The Batten Disease Global Research Initiative (BDGRI) is proud to announce the recipients of its 2026 Research Grant Round, with a total of USD $150,000 awarded to three innovative Batten disease research projects. Following a rigorous international review process, the selected projects were chosen for their scientific merit, translational potential, and alignment with the top Research Priorities for [...]

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