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 2025 NEWSLETTER | The Illuminator From BDSRA
October 2025 Volume 36, Issue 10 BATTEN DISEASE MENTIONED IN TV SHOW + IMPORTANT SURVEY Annual Appeal is Upon Us The fourth quarter is upon us, and for most nonprofit organizations, this means the annual appeal. The BDSRA Foundation is no different, and we need your help. This [...]
From Voices to Breakthroughs—the 2025 NORD Breakthrough Summit | Batten Disease
Written by BDSRA Foundation President & CEO Amy Fenton Parker Thanks to a travel grant I received from the National Organization for Rare Diseases (NORD), I was able to attend their annual Breakthrough Summit for the first time. It was wonderful to meet new colleagues and reconnect with those I haven’t seen for a while. Amid the government shutdown that has disrupted healthcare, slowed research, and strained complex systems, I traveled to the NORD Breakthrough Summit with many [...]
