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
CLN2 Batten Disease Update from Latus Bio
Latus Bio announced today clearance by the U.S. Food and Drug Administration (FDA) of the Company’s Investigational New Drug (IND) application for LTS-101, a gene therapy candidate that’s intended to treat the CNS manifestations of CLN2 disease. The FDA has also granted Orphan Drug, Rare Pediatric Disease, and Fast Track designations for LTS-101. Full Press Release Giving Tuesday Update We made early progress! As of this morning, we were nearing $300 on the way to our [...]
Our Giving Tuesday Goal | Batten Disease
Giving Tuesday is NEXT WEEK! We know this year has been tough, so that’s why, whether you’re able to donate or not, we encourage you to share this email to spread the word! Any gift, no matter the amount, will make a direct impact – providing vital support to families, driving research forward, and pushing for treatments that can change lives. Families still need care, research still needs funding, and the path to a cure still needs [...]
