Episode Details

In this episode, host Jenn Dawson speaks with Anne Davis, Pys.D., clinical psychologist, grief and trauma specialist, and mother of Hallie Grace Davis, who lived with junctional epidermolysis bullosa (EB). Anne shares Hallie’s story and how her family created Heroes for Hallie Grace to support EB families through memorial and welcome bundles, practical assistance via the Wings of Care Initiative, community events like the Butterfly Ball, and research funding. This conversation offers a clear message for researchers and clinicians alike: center quality of life, listen to patients' and caregivers' experiences, and work together to accelerate progress.

Please click here to learn more about Heroes for Hallie Grace.