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Episode 131: Paul Frase and Alison Rockett, Myotubular Myopathy Awareness
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On this episode, Karen speaks with Paul Frase, 11-year NFL Super Bowl veteran, and Alison Rockett, CEO and President and Co-Founder of The Joshua Frase Foundation, the parents of Isabella and Joshua. Joshua was born on February 2, 1995, with an ultra-rare and fatal neuromuscular disorder called myotubular myopathy and passed away on December 24, 2010, at the age of 15. Myotubular myopathy claims the lives of 50 percent of its victims before the age of 2. During Joshua’s life, Paul and Alison created Joshua’s legacy, The Joshua Frase Foundation, a non-profit that raises funds for cutting-edge research in regenerative medicine, gene therapy and genetics. Paul and Alison are here to share the story of their son’s life and the impact that The Joshua Frase Foundation has had on finding a cure for myotubular myopathy.
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