A Mission of the Heart | Batten Disease Support and Research Association

Website Translation

Recent Bulletins

Progresses in Batten disease research (video)
Updated: 2010-08-30 16:25:54
Dog Gene Offers Clues to Rare Human Brain Disease
Updated: 2010-08-30 16:25:34
Is it time we paid more attention to rare disease?
Updated: 2010-08-25 10:00:56

Help Raise Funds

Donate to Batten Disease and help fund the necessary research developments to find solutions to Batten Disease.

Donate To BDSRA Online

Mission: "To 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."

The Batten Disease Support and Research Association (BDSRA) began in 1987 by a group of parents looking for strength and support in a disease that only gives fear and uncertainty to those it affects. Our organization focuses on three things:

  1. Providing information
  2. Supporting families
  3. Promoting research efforts

We are the only family support organization in the United States, Canada, New Zealand, Australia, South Africa, as well as other nations, which is specific to Batten Disease.

Research

The U S Federal Government allocates approximately $3 million dollars for Batten Disease research, not near enough. BDSRA also provides research funding at the rate of about $500,000 annually.

Support

Until such time that the answers are found to Batten Disease, BDSRA provides medical referrals, information, education, and emotional support to the children and their families.

The most common forms of Batten disease BDSRA supports includes Infantile, Juvenile, Late Juvenile and Adult Neuronal Ceroid Lipofuscinoses (NCL).