RARECast: A Teenager’s Transformation from Patient to Advocate

March 23, 2015

As a child, Sami Petersen developed progressive scoliosis, a severe curvature of the spine as a result of a rare genetic disease. The condition eventually led to complex spinal surgery to correct the worsening deformity, pain, and complications. As she recovered from her operation, Petersen, who was 15 at the time, decided to launch the organization SHIFT Scoliosis, which has grown from a small awareness initiative to an organization that is reaching thousands of people through its education, awareness, and outreach programs. As part of a series of podcast revisiting past winners of Global Genes Champions of Hope award, we spoke to Petersen, a 2014 teen advocacy honoree, about her experience with scoliosis, what led her to launch SHIFT, and how she’s reaching people around the world.


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. 

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