Batten Disease Support and Research Association

The Batten Disease Support and Research Association (BDSRA) is a 501(c)(3) voluntary, non-profit organization dedicated to promoting the civil and human rights of people with Batten disease. Batten disease, an extremely rare inherited disorder, is a progressive degenerative neuro metabolic disease characterized by gradual intellectual deterioration, seizure episodes, progressive movement (motor) impairment, and progressive visual impairment. Symptoms begin to occur at approximately five to 13 years of age. The association seeks to maximize the opportunities of affected individuals through medical, educational, vocational, rehabilitative, and financial means, and to educate lay persons and professionals concerning the special needs of people with the disease. Established in 1987, the Batten Disease Support and Research Association provides referral services to help affected families secure benefits available by law and maintains a database of individuals with Batten disease on state, national, and international levels. It functions as a national registry for researchers throughout the world who are studying Batten disease.