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
CLN7 Community News
Dear CLN7 Community, Over the last several months, there have been many questions and, unfortunately, some conflicting information circulating regarding the CLN7 clinical program. We recognize how difficult this uncertainty is for families waiting for potential treatment and want to provide an update on where the program stands and what families can expect next. In March 2026, Julinha was treated at UTSW with a dose equivalent to the dose previously administered to patients in the prior high-dose [...]
Exciting news for the CLN3 Batten disease community!
The University of Michigan has received a $3.9 million NIH award to advance a novel ASO therapy targeting the common CLN3 ‘1kb deletion’ mutation—the most common genetic variant causing CLN3 disease. Led by Dr Michelle Hastings, this is the same team behind Zebronkysen, the personalised ASO currently being evaluated in a clinical study in two sisters with a unique CLN3 mutation. This new program has the potential to extend this therapeutic approach to a much larger group of individuals with CLN3 disease. 💙 Congratulations [...]
