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To be an international support and research networking organization for families of children and young adults with an inherited neurological degenerative disorder known as Batten Disease .
In order to effectively combat the devastation of the disease and to fully support research efforts to unravel the mysteries on Batten, the worlds of medical science and the victims 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, 1986, by Gary and Judith Grant of Spanaway, Washington, who are parents of three Battenvictims. Seeing the tremendous need for a unified entity that would work toward important goals and recognizing, as well, the need for support among victims and their families, the founders designed the association to:
maximize the opportunities of victims of Battento lead as normal lives as possible
provide a parent communication network, information and emotional support to families of persons with Batten Disease
educate lay persons and professionals about the special needs of Batten Disease victims and their families
act as a national registry for NCL researchers throughout the world.
All of the services of BDSRA are available across the nation, for a minimal membership fee, and are available at all levels of participation. BDSRA is a not for profit 501(c)3 organization. Some of the individuals who turn to the association have need of the full range of services - contact, newsletter, research, and registry information - and are willing to assist the Association in compiling information and providing professionals with facts and observations. Others want simply to receive the newsletter and remain anonymous to all other aspects of BDSRA Whatever the needs, BDSRA can meet them.
- Amy Lombardi
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