On this episode, Kerry interviews Donna Sullivan, a patient advocate with the organization TCAPP, The Coalition Against Pediatric Pain. She is a graduate of Providence College and has worked for more than two decades in media, communications and marketing with some of the world’s biggest brands. Donna uses her skills to help TCAPP raise awareness of the needs of children living with complex pain. She and her husband have three children diagnosed with Ehlers-Danlos Syndrome, POTS, and complex regional pain syndrome. Donna’s goal is to give voice to the real struggles that families with complex pain face in trying to get appropriate care and treatment.

On this episode, John Ferman returns to talk about his recent work with his organization EDS Awareness/Chronic Pain Partners. EDS Awareness/Chronic Pain Partners has tons of great content including free online webinars that are posted to YouTube (one of which has an astounding 50,000 views) so definitely check them out if you haven’t already and are looking to learn more about Ehlers-Danlos and chronic pain. One of the recent topics John has been working on is raising awareness about how EDS is not “all in your head.”