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
AUGUST NEWSLETTER | Read The Illuminator
August 2024 Volume 35, Issue 8 MAJOR CLINICAL NEWS On August 27, Tern Therapeutics announced its launch and entered into a global licensing agreement with REGENXBIO for RGX-381 and RGX-181 (now designated TTX-381 and 181, respectively) to form its initial therapeutic pipeline. [...]
Batten Disease Research Updates with Dr. Ineka Whiteman | August 2024 Illuminator Edition
It's time for research updates! BDSRA Foundation's Head of Research & Medical Affairs Dr. Ineka Whiteman breaks down Batten disease clinical program updates, research news & opportunities, and resources in her monthly column, as seen in BDSRA's monthly newsletter, The Illuminator. Centers of Excellence and Research Visits During my recent visit to the U.S., coinciding with the Annual Family Conference in St. Louis, I was excited to have the opportunity to visit two U.S. Batten Disease Centers [...]
