Headshot of Adam Johnson

Adam Johnson Volunteer

Mitochondrial Patient Advocacy & Outreach


Adam Johnson is a rare disease patient & self-proclaimed DadVocate (a dad first & advocate second). He is a lifelong educator who lost his career after receiving a life-altering mitochondrial disease diagnosis in 2019. Feeling alone, afraid, & helpless, he sought connection with others & began advocating through social media (Twitter & Instagram), a website & blog (, and most recently, a podcast series called Parents As Rare, part of MitoAction’s Energy In Action podcast. His overall motivation stems from the goal to own his story while supporting others along the way, including his children, family, the rare disease & mitochondrial disease communities, and other parents facing similar challenges.