Our long-term vision is a world without Batten disease. Our mission is to support Batten families, fund and facilitate research and advocate for treatments and a cure.


BDSRA was founded in Spanaway, Washington, by Judith A. Grant. Mrs. Grant was the mother of three children with Batten disease. Knowing of other families with children also diagnosed with Batten disease, Mrs. Grant had the foresight to see the need for an organization of families that would foster support, education, information, referrals, and advocacy. She also saw the need to promote research through the combined efforts of families and professionals.

Judith Grant was the first president of BDSRA, and to date, has been succeeded by Lance Johnston, Kathleen Potterfield, Larry Killen, George Maxim, Jane Emanuel, MD, Kim Zellmer, Esq., Rob Geer, and Darlene Royalty.

BDSRA was originally chartered as a nonprofit organization in the State of Washington on July 27, 1987. In 2006, BDSRA was converted to an Ohio nonprofit organization. In April 1991, BDSRA’s national headquarters was relocated to Columbus, Ohio, where it remains today.

The Batten Disease Support and Research Association (BDSRA) is the largest support and research organization in North America for families affected by this disease. There are similar family support groups in the United Kingdom, Australia, Finland, Germany, Norway, Denmark and other countries. BDSRA is happy to provide whatever support we can to families in countries without support organizations.