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.
Recent News
JUNE 2025 NEWSLETTER | The Illuminator From BDSRA
June 2025 Volume 36, Issue 6 IT'S ANNUAL FAMILY CONFERENCE MONTH! It's almost that time! It's not too late to register and attend the Annual Family [...]
Hotel Room Block Deadline is JULY 1
Reserve your Hotel Rooms by TOMORROW, July 1! TOMORROW, Tuesday, July 1, is the deadline to reserve rooms in the hotel block for the Annual Family Conference in Lincoln, Nebraska, from July 11-13. Click below to reserve your rooms, register, view the agenda, and more! Conference Info
