https://bdsrafoundation.org
The Batten Disease Support and Research Association (BDSRA) began in 1987 by a group of parents looking for strength and support in a disease that only gives fear and uncertainty to those it affects. Our organization focuses on three things: Providing information, Supporting families, Promoting research efforts. We are the only family support organization in the United States, Canada, New Zealand, Australia, South Africa, as well as other nations, which is specific to Batten Disease.