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Batten Disease Support and Research Association (BDSRA)

Last Update:3/13/2018
Contact:Margie Frazier
Title:Executive Director
Address:2780 Airport Drive
Suite 342
Columbus, OH 43219
County:Out of state
Phone:
Toll Free:800-448-4570
Fax:866-648-8718
TDY:
E-Mail:
Website:www.bdsra.org
Mission
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
Program Description
Services available for Families affected by Batten Disease:
  • nformation and education about Batten Disease and related medical and educational issues.
  • 1-800 toll free number accessible from anywhere in the USA and Canada Family support through networking with other families.
  • Sibling Program which provides a means for siblings of children affected with Batten disease to communicate with other siblings and work on their fears and concerns.
  • Grandparent Support Program was created to help grandparents and other relatives cope with the devastation of Batten disease to be able to understand and help their own children emotionally and physically.
  • Annual Conference brings together families, scientists, doctors, and educators from around the world to share information, support, knowledge and experiences.
  • Medical referrals & a medical advisory board whose purpose is to assist families.
  • Education Support Program helps both families and schools learn how to understand the process of Batten disease as it affects a child's education.
  • Equipment Exchange Program allows for no longer needed equipment to be donated to families who may need expensive or hard to find equipment.
  • Diagnosis Review Program was created to assist physicians and families through the Medical Advisory Board and Scientific Advisory Board to evaluate previous test results, providing direction to famlilies in finding a correct diagnosis for their child.
  • Bereavement Outreach Program which provides continuing support after the death of a children with Batten Disease.
  • Monthly Newsletter.
Financial
Please call for information on costs or charges.
Services
Family Support
Information & Referral
Neurological Disorders
Parent to Parent/Matching
Research
Spanish speaking community/materials
Counties Serviced
Nationwide
ABOUT SPECIAL KIDS RESOURCE DIRECTORY
7172 Graham Road, Suite 100, Indianapolis, IN 46250 E-Mail: familynetw@aboutspecialkids.org

As a matter of policy, About Special Kids does not specifically endorse any of the resources contained on our website or in our information packets. Resources are supplied for information purposes only and ASK recommends that families explore all options for assistance before making an informed choice.