Family and Caregiver Support

Welcome to the section of BDSRA’s web site for families and caregivers.  We’re glad you’re here!  Our goal is to provide accurate, up-to-date information about many aspects of Batten disease including concerns you may have about coping with Batten disease and/or how your family members are coping.  We have included helpful links to a range of community resources and informative sites, so that you can focus your attention on your loved one/s with Batten disease.

It’s common when you are told your child or family member has Batten disease to be overcome with strong emotions – fear, anxiety, sadness, and even despair.  Parents often have many questions…

  • How will I cope with having a child with this disease?
  • Where can I get help?
  • What about my unaffected child/children?  How can I help them cope with our situation?
  • What particular needs will my child have as the disease progresses?

For more than 25 years. BDSRA has provided help and hope for families living with Batten disease.

“When our son was first diagnosed, our family didn’t know anything about Batten disease – it’s so rare.  When we searched online, we found BDSRA.  The staff and connections with other Batten families that we’ve come to know through attending the annual conference have been priceless.” – Batten mom of daughter with Late Infantile Batten disease

“When you get the finally get the diagnosis of Batten disease, it’s a devastating message for any parent to hear.  We wanted to know all that’s happening with research discoveries to find a cure.  BDSRA not only helps educate families about current available clinical trials, they also dedicate part of their budget to fund Batten researchers throughout the world.  We can’t thank them enough!” – Batten dad of son with Juvenile Batten disease

The entire Batten community — staff, other Batten parents, Batten siblings, board members, doctors, researchers, corporate sponsors, nurses, volunteers, paraprofessionals, special education teachers, clinicians and donors are all working towards the same goal in providing hope for a cure and help for the journey for you and your loved ones.

As you navigate BDSRA’s web site, you’ll find information about programs specific to BDSRA as well as information and links to government and community resources.  These resources will help you to better understand your loved one’s needs and manage the day-to-day challenges of caring for someone with Batten disease.

This storehouse of information is ever changing and we welcome your feedback to help improve the information we provide to all Batten families.

Contact Tracy Kirby, Family Liaison and Administrative Lead at tkirby@bdsra.org with your comments, corrections, suggestions or concerns with regard to information on the web site and any changes you would recommend.  

Learn More:

Parenting and Finding Emotional Support
Parents As Advocates
Parents and Family Members as Caregivers
Bereaved Parents and Caregivers