Support for Batten Siblings

Since the founding of BDSRA in 1987 by parents of children with Batten disease, providing programs, services and support to families has been a central focus of the mission of the organization.  Currently, BDSRA is the only family support organization in North America dedicated to serving newly diagnosed families, families coping with caring for a loved one and those who have lost a child to Batten disease.

Sibs Program at the BDSRA Annual Family Conference

Siblings of all ages can connect with others like themselves each year at the BDSRA Annual Family Conference.  Sibs enjoy planned recreational and social activities throughout the conference and make lasting friendships.  Sibs ages 6 years old and older can take part in day trips to local attractions with their peers.  The younger sibs, ages 5 years old and under can join in the fun activities in the Teddy Bear Club, a special on-site daycare, so that parents can attend the sessions without childcare worries.  Both the outings and Teddy Bear Club are supervised by adult volunteers.  A highlight of the conference weekend is the Sibs Dance Party on Saturday evening, which is open to all conference attendees.  Check out conference details here:  BDSRA Annual Family Conference

Parenting a Child or Teen Who is Grieving

These links and resources serve as a starting point for parents and caregivers to learn more about the way children and teens cope with loss and grief.  We sometimes recommend that families get help from a professional counselor or therapist familiar with grief issues.  If you or someone you love would like to find a helping professional to cope with grief and loss issues in your community, contact Margie Frazier, Ph.D., LISW-S, BDSRA Executive Director at 614-973-6011 or


The Dougy Center – The National Center for Grieving Children and Families

The Dougy Center provides support in a safe place where children, teens, young adults, and their families grieving a death can share their experiences.  They provide support and training locally, nationally and internationally to individuals and organizations seeking to assist children in grief. Services are free of charge.


Magination Press