DSF has long recognized the many needs within our patient community, particularly the burden of caregivers. It is a lot of work, mentally and physically. Our caregiver community frequently talks about feelings of isolation, depression about the diagnosis, and anxiety over what their child’s future looks like. On top of that they are overworked and exhausted in managing their child’s medical, educational, and emotional needs. They are left with little or no down time when they can relax, rest, or have fun.

Caregiver Connect is a unique program with a focus on helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy who has complex lifelong medical needs. These modules share the experiences of other caregivers, as well as useful tip sheets. This program is designed to help parents manage and cope with the ongoing demands and stress they face on a daily basis. The modules are broken down into four important topics: Taking Care of the Caregiver; Caregiver Burnout; Communicating Emotions, Needs & Concerns; and Managing Grief.  Each module offers multiple videos that you can watch on demand, as your schedule allows, as well as a coordinating tip sheet.

In collaboration with DSF, Caregiver Connect was developed by The Center for Pediatric Traumatic Stress at The Children’s Hospital of Philadelphia and Nemours Hospital for Children, Delaware. This program is fully funded through a generous educational grant from