Once Upon a Gene with Effie Parks
Today on the show, I talk to Effie Parks, a fierce podcaster raising a child with a rare disease. After giving birth to her first child, Ford, Effie was dismissed by the medical community over concerns she had about her son’s health. Almost a year later, Ford was diagnosed with a rare genetic disorder called CTNNB1 syndrome, which impairs speech and neurodevelopment. Effie had no handbook and no one to turn to, so she picked up a microphone and sounded the rallying cry for parents of disabled children and other caregivers. Her podcast, Once Upon a Gene, won the 2021 WEGO Health Award Winner for Best in Show: Podcast. Effie’s here to talk about growing up in Montana, why language matters, and all of life’s unexpected pivots.