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

Batten Disease & BDSRA Fundraising Update

March 18th, 2026|

  🚨 FINAL CALL 🚨 Support the Batten disease community and the BDSRA Foundation today by purchasing some sweets from See's Candies!  Any purchase helps us support Batten families, fund and facilitate research, and advocate for treatments and a cure.  Order Now   Your Impact Matters Thank you to our donors for delivering a pot of gold! We know times are tough, and you work hard for your money. But know your gifts to the BDSRA Foundation from [...]

Happy St. Patrick’s Day, Batten Disease Community!

March 17th, 2026|

  HAPPY ST. PATRICK’S DAY! 🌈🍀🌈🍀 TODAY’S THE DAY for our No-Show St. Patrick’s Day Dinner Fundraiser. We invite you to stay home, enjoy your evening, and consider donating an amount equal to what you might normally spend on dinner out. Help support the Batten disease community and the BDSRA Foundation today. Fundraiser Details Donation Page  

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