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
Why fundraise for BDSRA and Batten disease?
“If every single person on the planet knew about what Batten disease was doing to kids, I think there'd be a cure by now.” Supporting fellow Batten families and finding a cure for Batten disease are why Terry and Stacy Thoene, parents of Oliver, who has CLN2 Batten disease, raise funds for BDSRA through the Fam Funds program. You can support the Thoene family’s fundraiser and many others by visiting the Fam Funds page. Give Today [...]
Why NOW is the time to give to BDSRA
Thanks to YOUR generosity, major initiatives like the revitalization of the Centers of Excellence program, the establishment of the Batten Disease Global Research Initiative (BDGRI), and the Batten Disease Clinical Research Consortium (BDCRC) have become a reality. We can’t stop now. Help us take steps forward in Batten disease research by donating to the BDSRA Foundation. Give Today Ways to Give Or mail a check to: BDSRA Foundation PO Box 30049 Gahanna, OH 43230 [...]
