Batten Disease Support And Research Association

Our Mission

The Batten Disease Support and Research Association (BDSRA) is the largest nonprofit organization in North America dedicated to funding research, advancing education, providing family support services, and raising awareness of the disease and its impact. Founded in 1987, the focus of BDSRA is to help unravel the mysteries of Batten disease by bringing the worlds of science, research, and health care together toward a common goal: the discovery of treatments and cures. Programs and services are designed to connect Batten families with resources and specialized care, build networks for optimal care for patients, educate health professionals and the public about the disease, and assist families in managing the emotional, financial, and medical requirements of those affected. BDSRA's research program is a peer-reviewed grant process that focuses on cutting edge technologies and both applied and basic research, including gene therapy, enzyme replacement, and drug discovery. BDSRA also builds alliances and networks across state and federal legislative channels to raise awareness. By educating policymakers and government leaders, BDSRA adds a unified voice to advocate for research funding. As a rare, fatal, inherited disorder of the nervous system, Batten disease has no known treatment or cure. As a lysosomal storage disorder caused by genetic mutations, Batten disease primarily affects the nervous system. The disease occurs in approximately 2-4 births per 100,000 in the U.S. Early symptoms appear in childhood. There are U.S. Chapters of BDSRA in many regions across the U.S. and Canada, as well as global affiliates in Europe, South America, and Asia. All forms of Batten disease result in a shortened life span, and those diagnosed have extensive needs for comprehensive medical care. As a rare disease, Batten is severely underfunded in research and scientific studies.