Latest Episodes
Honoring Katie: The Rare Disease Friendships That Change Everything
Stephanie and Tasia return to Energy in Action to honor their beloved friend Katie—a fierce advocate, deep thinker, and unforgettable presence in the rare...
Why Mito Care Is Finally Changing
Dr. Rosanna Sanchez Russo is a biochemical geneticist at Emory University who has dedicated her career to caring for patients with mitochondrial and other...
How Mighty Matthew Keeps Moving Forward
Matthew Cech has spent his entire life adapting to mitochondrial disease, but his story is about far more than the medical challenges he has...
Supporting Siblings in Rare Disease Families
Ryan Mendel is a graduate student in genetic counseling who has already immersed herself in mitochondrial research, clinical care, and rare disease advocacy. In...
Fighting for Approval and Winning
Walker, Madison, and Jordan are three relentless advocates whose determination helped push a life-changing therapy for Barth syndrome across the finish line. In this...
Hope for FAOD Patients Through Research
Dr. Melanie Gillingham is a professor of molecular and medical genetics at Oregon Health & Science University and one of the leading researchers in...