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
SEPTEMBER NEWSLETTER | Read The Illuminator
September 2024 Volume 35, Issue 9 The Latest Important News Regarding BDSRA Family Grants Dear Batten Community, In 2023 we awarded $71,800 for families through our grant programs, including the Fore The Journey funding provided by the ForeBatten Foundation. This [...]
Batten Disease Q&A | Global Genes RARE Advocacy Summit Summary
KANSAS CITY, Mo. – The Batten Disease Support, Research, and Advocacy (BDSRA) Foundation was represented at this year’s Global Genes RARE Advocacy Summit in Kansas City, Missouri. BDSRA Database Manager Noah Siedman attended the event and was featured as a speaker on the Rare Siblings panel. Below, Siedman analyzes the sessions he attended, his message to the audience during the Rare Siblings panel, and his overall takeaways from the event and how they can help the Batten disease [...]
