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

How Your Gifts Impact the BDSRA Annual Family Conference

November 19th, 2024|

  The BDSRA Annual Family Conference is a staple with our Batten disease community made possible by our donors. By giving to BDSRA, you help ensure this yearly tradition and the positive impact it has on families, SIBs, bereaved parents, researchers, clinicians, and staff continues. Invest in our Mission   Other Ways to Give Did you know you can give to the BDSRA Foundation with a qualified charitable distribution (QCD)? Also known as an IRA distribution, a QCD [...]

NOW AVAILABLE: The BDSRA 2023 Impact Report!

November 7th, 2024|

  The BDSRA Foundation 2023 Impact Report is here! We will never stop advocating for Batten disease families of ALL CLN types. Click the buttons below to read the report and to donate to BDSRA. Read the Impact Report Donate to BDSRA  

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