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
OCTOBER NEWSLETTER | Read The Illuminator
October 2024 Volume 35, Issue 10 The Latest COMING TO YOUR MAILBOX SOON: The 2023 Impact Report! The 2023 BDSRA Foundation Impact Report will be delivered to you this week! As the 2024 Annual Appeal gets underway, we encourage you [...]
Batten Disease Research Updates with Dr. Ineka Whiteman | October 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. Batten Disease Global Research Initiative (BDGRI) The Batten Disease Global Research Initiative opened its inaugural round in July, calling for Expressions of Interest. The number of applications we received surpassed all expectations and we were impressed [...]
