Batten Disease Support and Research Association

Record last updated 2017/02/09 Comment on this info .Update this info

Contact Information

Batten Disease Support and Research Association
Contact: Margie Frazier, Executive Director
Email Address: mfrazier@bdsra.org
Phone: (800) 448-4570

1175 Dublin Road Columbus, OH 43215
Area Served: Out of State

Map Location Batten Disease Support and Research Association

Narrative

Support and networking for families of kids with Batten Disease.  Children and adults with Batten disease have inherited genetic material from their parents that may take some years to come to bear in their everyday lives. And when it does, families are often in shock when they learn how a normal child or adult (Kufs form) could change quickly, and without seeming cause. Regardless of where your loved one is in the progression of Batten disease, BDSRA wants you to know there is a community of people like you learning about and coping with this life limiting illness.

Program Type

  • Advocacy
  • Information/Referral

Populations Served

  • Batten Disease

Ages Served

  • 14 - 18
  • 19 – 22
  • 23 – 59
  • 3 - 4
  • 5 - 8
  • 60 +
  • 9 - 13
  • Birth to 3

Additional Information

  • Fees: Free Service