ALISON ROCKETT
Alison Rockett is the co-author of the book "Game Changer" “A Boy, A Dog, and A Cure.” Alison has dedicated her life advocating for families with children affected by a fatal neuromuscular disorder on a global level.
She spearheaded the development of a technology which
showed proof of concept in two animal models.
Her locating the only known large animal model for this disorder in the world changed the trajectory for congenital myopathy research.
She was instrumental in building two biobanks, collaborated
on the largest data collection in the world, provided data for
Pharma’s FDA IND ( investigational New Drug Application) submission, drove global patient engagement, and pitched Pharma which built a company around her efforts.
Alison worked side by side, with both families and Pharma to
drive clinical trials forward. All while advocating for the safety
and efficacy of these children and families involved in clinical
trials. This was fueled by her vision and her sons dream for a cure for his peers.
• Dedicated advocate for families with children affected by neuromuscular disorders for over 25 years
• Co-Founder, CEO and President of a non-profit organization, The Joshua Frase Foundation
• Raised over $8M for pre-clinical research studies on behalf of the Foundation
• Discovered the first XL-MTM canine model in the world.
• This discovery changed the trajectory of neuromuscular research for congenital myopathies.
• Successfully led a gene therapy application to the FDA
• Elevated awareness of neuromuscular disorders and promoted involvement and communication of patients and families on a local, national, and international level
• Developed intellectual property strategy to protect gene therapy discoveries and attract Pharma
• Currently leading the development of a patient-reported events and outcomes in worlds largest database
• Available for speaking engagements to share life experiences, knowledge on advocating for families affected by neuromuscular disorders, collaborating with Pharma and promoting innovative research
TESTIMONIALS
“Alison brings passion, integrity, intellect, and efficiency to the Joshua Frase Foundation. Her desire and dedication to make a difference in the lives of those who suffer from cogenital myopathies and their families is admirable. I highly recommend Alison in this her life's pursuit.”
Chad Hennings
Partner/Principal at Rubicon, United States Air Force Academy, NFL Veteran / Cowboys
PUBLICATION
Would Joshua die the day he was born?
After twenty-four days in Medical City's Neonatal Intensive Care Unit in Dallas, Texas, Joshua was sent home with his parents, Paul and Alison. The doctors said, "If your son is alive in a year, bring him back and we'll re-evaluate him." The doctors couldn't possibly have known what would take place over the next 15 years and 11 months.
Joshua's will to live, mixed with the resolve and relentless fortitude of his mother and the determination of his NFL father would change the face of Myotubular Myopathy (MTM) and neuromuscular research. History was destined to be written.
It's a story of a boy, a dog and a cure.
DOCUMENTARIES
New step in the treatment of myotubular myopathy by gene therapy
