Batten Disease Support and Research Association (BDSRA)

Data Provided By
United Way of Weld County United Way of Weld County
General Information
Description of AgencyBatten Disease Support and Research Association (BDSRA) began in 1987 by a group of parents looking for strength and support for a disease that only gives fear and uncertainty to those it affects.

We are the only family support organization in the United States and Canada with chapters in New Zealand, Australia, South Africa, Spain and South America. We help families worldwide.
MissionTo be an international support and research networking organization for families of children and young adults with an inherited neurological degenerative disease known as Batten disease.
HistoryBDSRA 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 that have children with the 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.
LocationOut of State
Geographic AreaNationwide, Statewide
Intake ProcedureCall or visit website for more information.
Agency TypeNon-Profit
Client Information
Languages SpokenEnglish
Hours of OperationMonday - Friday, 8 a.m. - 5 p.m.
Contact Information
Physical Site Address 1166 Humphries Dr
Physical Site City, State, ZipReynoldsburg, OH 43068
Main Phone1-800-448-4570
Other Phone(740) 927-4298
Director Information
Director's NameMr. Jane Emanuel
Director's PositionPresident
Director's Phone(740) 927-4298
Additional Information
Date Agency Entered08/05/2005
Affiliated Programs and Services
This Agency: Batten Disease Support and Research Association (BDSRA)
Affiliated Programs: Health Care - Batten Disease Support and Research Association (BDSRA)
Affiliated Services: Family Support - Batten Disease Support and Research Association (BDSRA)