Paul Frase

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 muchneeded 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.