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
Beth Fries to Lead Development Projects for the BDSRA Foundation
Beth Fries We have contracted Beth Fries, a Batten mother to her two CLN3-affected daughters, to lead development projects for BDSRA, including the re-launch of our Fam Funds initiative! Beth will be the main contact for Fam Funds, helping families launch their own fundraisers to help raise funds for BDSRA. Stay tuned for more information on this exciting initiative and how to sign up!
2024 Year-In-Review
CLICK HERE TO DONATE TO BDSRA We’re just getting started, and we're looking forward to 2025! Reminder: Our office will be closed on New Year's Day. Regular office hours will resume on Thursday, January 2. Join us in our Fight for Treatments and Cures
