Episode 131: Paul Frase and Alison Rockett, Myotubular Myopathy Awareness
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.
Paul Frase and Alison Rockett Bio
Paul Frase and Alison Rockett had everything—Paul was an NFL defensive lineman; Alison was an assistant manager for Guns N’ Roses and a personal assistant to fashion design mogul Max Azria, founder of BCBG.
Their first child, Joshua, was born with a muscular disorder called myotubular myopathy (MTM). The doctors would not give him more than 24 hours to live. Alison became Joshua’s advocate, and eventually the patient advocate for a whole community. Alison taught herself how to keep her son alive and had to resuscitate him numerous times. Before Joshua had his first birthday, Alison and her husband, Paul, started a foundation that would one day find the cure for their son’s disease. Knowing nothing about scientific research for a rare orphan disease, Alison educated herself and trusted her instincts. When she received a vision of handing a large check to a renowned researcher, she chased that vision with relentless passion until its fruition.
Alison has since been published in Human Gene Therapy and was featured in the MIT Technology Review. Alison has forged relationships with MDA, NIH, NORD and Global Genes during the Joshua Frase Foundation’s quest for a cure for MTM. Paul and the family were featured in USA Today during the week of Super Bowl 32, when he was a member of the Green Bay Packers squad.
Paul and Alison have been interviewed by Jerry Lee Lewis of the MDA Telethon, Jeremy Schaap on The Sporting Life, and countless other television and radio personalities and broadcasts. Paul also has been on Fox and Friends to promote the foundation.
Paul played for eleven seasons as a defensive lineman (from 1988 to 1998) with the New York Jets, Jacksonville Jaguars, Green Bay Packers, and Baltimore Ravens. He is the unprecedented two-time recipient of the Ed Block Courage award, a peer selected honor that identifies a team player who exemplifies commitment to the principles of sportsmanship and courage.
Paul’s job as an NFL defensive lineman was more than just a dream job; it was the vehicle the Frases used to start their foundation, give it its much- needed publicity, and provide its initial financial backing.
One of Paul’s greatest joys, however, happened off the football field. Instead of carrying a pigskin ball, he carried his precious son, Joshua, through the playground of life, one activity at a time.
The Joshua Frase Foundation website remains the largest and most comprehensive compilation of information for MTM.