Connecting with Other Caregivers

Published on in Stroke Notes

Parents and guardians often find it helpful to connect with other families with a child who has had a stroke. But it can be difficult to find these people in your community.

There are a variety of online support groups and discussion boards that make it easier to connect with other parents, no matter where you live.

Here are some online and in-person support networks offered by The Children’s Hospital of Philadelphia and other organizations.

If you need help accessing parent support resources, please contact the Pediatric Stroke Program.

At CHOP:

  • Pediatric Stroke Program Parent Support Group: The Pediatric Stroke Program Parent Support Group meets the third Thursday of every month, alternating between lunchtime and evening meetings. Meeting format is often informal and ranges from parent discussions to guest presentations from community resources.
  • Neuro-Rehabilitation Parent Support Group: The Neuro-Rehab Parent Support Group is open to parents and caregivers of children with acquired brain injury (including traumatic brain injury and stroke). The group meets the second Wednesday of every month from 7 to 8:30 p.m.

In the community:

  • Children’s Hemiplegia and Stroke Association (CHASA): CHASA is a nonprofit organization founded by parents of children with hemiplegia. Their goal is to provide support and advocacy for children who have had a stroke or other brain injury resulting in hemiplegia or hemiparesis (weakness on one side of the body). CHASA operates several online support groups for families in addition to local chapter sponsored events and retreats. For additional information or to connect with one of CHASA’s support networks.
  • American Heart Association/American Stroke Association (AHA/ASA) Support Network: Newly-created online support networks include chat groups and discussion boards related to various topics. There is a discussion board dedicated solely to Pediatric Stroke. Visit the Support Network website to register and access these online support resources. Once you register, visit the “Special Groups” category and choose “Pediatric Stroke.”
  • Brain Injury Alliance of New Jersey (BIANJ): BIANJ has a family helpline to assist with access to local community resources as well as a wealth of information on their website. Support coordination services are also available in some counties.
  • Brain Injury Association of Pennsylvania (BIAPA): BIAPA provides a listing of support groups for regions across the state, a resource line, and pre-enrollment assistance information.
  • International Alliance for Pediatric Stroke (IAPS): IAPS was established to facilitate collaboration among the many international pediatric stroke communities. The purpose of the alliance is to provide a stronger, more united voice to effectively advocate for newborns, babies and children who have had a stroke.

Find more resources for stroke patients and families.