A Teenager's Transformation from Patient to Advocate

RARECast - A podcast by RARECast - Thursdays

Categories:

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.