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
UPCOMING EVENTS & DEADLINES
UPCOMING EVENTS There are LOTS of important events and deadlines coming soon! Check them out in the graphics above and click the buttons below for more information. Coffee Chats Conference Info Awareness Day June 17 Orientation Grief Chat Donate Today and Make a Difference
Your Batten Disease Awareness Day Toolkit!
Hello Batten Community, As promised in this April's Illuminator, we’re sharing a toolkit to help make participation in this year’s International Batten Disease Awareness Day—June 9th—simple and impactful. When you CLICK HERE, you’ll find: A pre-written letter you can email, print, or hand-deliver to your neighbors, friends, family—anyone who should know about Batten. A JPEG graphic you can share on your social media accounts to help spread awareness. Sample messages to accompany the social media graphic. This [...]
