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.
The latest issue of the newsletter is now available! Click below to read about the virtual family conference, International Batten Awareness Day, and how one family has chosen to give back to their community to honor their loved one. Click here to view https://conta.cc/2YK0rnO