History of BDSRA

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, and Kim Zellmer, Esq.

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.  In addition to BDSRA support in the United States and Canada, there are BDSRA chapters in South America, Australia, New Zealand and South Africa, just to name a few.  BDSRA currently serves over 1,200 families worldwide.

There are similar family support groups in the United Kingdom, Holland, Belgium, Germany, Norway, Denmark and other countries.  These support groups generally stay within the confines of these nations.

BDSRA is also a member of the newly-formed Batten Disease International Alliance (BDIA), an alliance of all Batten disease support and research groups that is headquartered in London.