By: The Batten Disease Support and Research Association (BDSRA)

NB: This 167 page handbook was written primarily for parents of children with Batten Disease. We provide it to you because it is a wonderful summary of the types of issues that a parent of a child with Batten Disease would want to know. Topics include a basic introduction to Physical Therapy and its role, early intervention, families and behavior, body mechanics for parents and care givers, medical issues, assistive technology and adaptive devices, exercises, advocacy, federal programs, a glossary and bibliography.

Download this book HERE

Featured Organization: Batten Disease Support and Research Association

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:

• Providing information
• Supporting families
• 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.

Please support our contributing organizations and visit the Batten Disease Support and Research Association Website