Board of Directors
Donna is a proud mom of three kids living with EDS, and a pioneering advocate raising awareness of the needs of children and families living with Ehlers-Danlos Syndrome, complex pain conditions and rare disease. She is a board member for The Coalition Against Pediatric Pain and Merlin’s Kids Service Dogs, and a member of The AHEAD Coalition for The Ehlers-Danlos Society. Donna serves as the Director of Patient Advocacy for Pathways To Trust, a non-profit that educates healthcare providers about the unmet needs of marginalized patient populations. She is also the consulting producer on the documentary film, Complicated, an exploration of the EDS experience currently in production by Open Eye Pictures.