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
NOW OPEN: Batten Disease Awareness Day Fundraising
It's that time of year again! For this year's International Batten Disease Awareness Day on June 9th, the BDSRA Foundation is setting a $75,000 fundraising goal. The proceeds you raise towards that goal will help BDSRA provide compassionate support and advocacy for all types of Batten disease. We know we can do it! We surpassed our original goal of $10,000 last year and tallied over $53,000 thanks to you and your advocacy. Register for the virtual 5K, [...]
WATCH: BDSRA’s Noah Siedman Speaks at NewYorkBIO Patient Engagement Summit
BDSRA Foundation Database Manager Noah Siedman spoke at the NewYorkBIO Patient Engagement Summit last month about his own experiences engaging with hope as a rare disease sibling. He was introduced by BDSRA Board Treasurer Fred Surrey. Watch Noah's full talk below and click here to read his script.
