Turning Lights and Camera into Action: A Mom’s Search for Answers

Carri Levy’s search to find answers to her daughter’s lifelong illness was made worse by doctors that insisted there was no problem. A producer for the daily morning show The Balancing Act on Lifetime TV, Levy launched the series Behind the Mystery: Rare and Genetic, in effort to search for answers to her daughter’s illness. As part of a series of podcasts revisiting past winners of Global Genes’ Champions of Hope award, we spoke to Levy, a 2013 advocacy honoree, about her search for a diagnosis for her daughter, her own transformation into being a patient advocate, and what effect connecting to the rare disease community through her television show has had on her.



RARECast is a weekly series by Daniel S. Levine. Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. He founded Levine Media Group in 2013, which produces The Bio Report and RARECast podcasts. Read his full bio here.