Family Services

BDSRA offers several programs and services to support and inform families affected by Batten disease.

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 nonprofit 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.


  • An 800 toll-free number accessible from anywhere in the USA and Canada
  • 12 Chapters in the United States, plus Chapters in Australia, Canada, New Zealand, South Africa, South America and Spain
  • Information and education about Batten disease and related medical and educational issues
  • Family support through networking with other families. Connect with others on Facebook
  • Disease-specific publications
  • Sibling support provides a “safe” means for those brothers and sisters of children with Batten disease to communicate with other siblings and share their fears and concerns
  • Grandparent support is available to provide grandparents and other relatives coping with the devastation of Batten disease to be able to understand and help their own children emotionally and physically
  • Participation in research
  • Genetic testing and counseling referrals
  • Scientific Advisory Board
  • Medical referrals and a Medical Advisory Board, whose purpose is to assist families and medical professionals
  • Quarterly newsletter The IlluminatorSign up today!


  • Parent Mentor Program was created to match parents of newly-diagnosed children with trained, experienced parents of a child with the same form of Batten disease to provide supportive outreach in which new and experienced parents can share information, concerns, fears, and victories
  • Annual Conference brings together families, scientists, doctors and educators from around the world to share information, research news, personal stories and emotional support
  • Education Support Program provides information and assistance to families and schools to understand the educational needs of children with Batten disease and to provide the best educational experience for the child
  • Equipment Exchange Program allows BDSRA families in need to receive, at no cost, gently used equipment generously donated by either individuals or other BDSRA families.  Medical and mobility equipment and supplies are very expensive and can be difficult to afford for a family with or without insurance
  • Sibling Carrier Testing Program is for siblings of individuals with Batten disease to be tested for carrier status if they do not have insurance coverage.  The program will also cover carrier testing for qualified spouses or fiancées and diagnostic testing for children of siblings
  • Tissue Donation Program provides scientists with tissue samples needed to advance research and pursue a cure for Batten disease
  • Bereavement Outreach Program provides continuing support to families after the death of a child with Batten disease
  • Family Directory for those families who desire to have contact with other families affected by Batten disease