Listen to a new episode of YNS Live with NFL Thread recorded live on Fireside with hosts Juliet Hahn and Cynthia Zordich featuring special guests Paul Frase and Alison Rockett.

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, and 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.

You can find more on their Website.

Remarkable Quotes

“I am the woman I am because my son lived, and I mean that wholeheartedly. If God gave me the choice today not to have lived that journey or to do it again, I would do it again, because truly, the joy outweighed the pain.”

“This book is Joshua's story. It’s a story about inspiration and hope and love. That's what Joshua is. A lot of people couldn't put the book down. They read it in one sitting.”

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