In order to effectively combat the devastation of the disease and to fully support research efforts to unravel the mysteries of Batten disease, the worlds of medical science, those affected by Batten disease and their families must meet and work closely together to reach understanding and common goals.
In an effort to bring those common goals to fruition, the Batten Disease Support and Research Association (BDSRA) was formed in July 1987, by Gary and Judith Grant of Spanaway, Washington, who had three children with the disease. Seeing the tremendous need for a unified entity that would work toward important goals, as well as recognizing the need for support for these families, the founders designed the association to:
- Maximize the opportunities of persons with Batten disease through medical, educational, vocational, habilitational and financial means in order to insure those persons lead lives as normal as possible;
- Provide technical assistance and emotional support to families of persons with Batten disease;
- Promote research on Batten disease and make the results of that research available to members;
- Educate lay persons and professionals concerning special needs of persons with Batten disease; and
- Assist by providing information and referral services to secure benefits available by law.