About

Our Mission

 

The Joshua Frase Foundation (JFF) is a 501C3 non-profit organization that was founded in 1996; a year after Paul and Alison’s son was born with an ultra rare and fatal neuromuscular disorder.  Without hesitation, the foundation began funding cutting-edge research in the area of regenerative medicine, gene therapy and genetics since 1997.  JFF’s mission is twofold: To find a cure or treatment for centronuclear and myotubular myopathies and to support families whose lives are affected by these disorders. Not only has JFF been able to fund groundbreaking science, pioneering into a curative treatment that has the potential to transform neuromuscular research; it has also built an international community of children and their parents. Longtime supporter, Amy Groshell, states, “JFF has been the search engine for the research and advocacy circles; connecting the dots so viable research has a practical outcome…The foundation has been the catalyst that has brought the research community and families together moving toward a cure”.

 

NFL Veteran, Paul Frase and his wife Alison on "How it all Began"...

Our journey began when our son, Joshua, was born on February 2, 1995. At the time of birth, his muscles were so weak that he could flex only his right hand and his lungs could barely draw the air that he needed to breathe. We were told parents; he may not survive the day. When Joshua was three months old, a muscle biopsy revealed myotubular myopathy (MTM), a rare muscle disorder. Tragically, only 70% of the children born with Joshua's disorder live to the age of two and few survive past their early school years.

For over twenty years we have been raising funds to support research in hopes of finding a treatment and/or cure for centronuclear myopathies. Over the past two decades, we have assembled a team of leading researchers from a variety of fields from many institutions here in the US, Canada and Europe. Together, their combined areas of expertise creates a multi-faceted approach, aimed at understanding the pathology of these disorders so that effective therapies can be formulated.

While we pursue a cure for CNM and MTM, we are also dedicated to supporting families in our community. Parents grapple with physical, financial and emotional hardship as they fight for the lives of their children. These children often cannot perform the simplest functions by themselves, like swallowing or breathing. These medically fragile children must be supervised 24 hours a day, often requiring nursing and expensive medical equipment and materials. In addition to monetary support to cover medical equipment, the Joshua Frase Foundation lends emotional support to families and we have helped create a network of individuals who stay in touch, stay informed and support each other through the daily struggles of centronuclear myopathies.

 

 "The truth of the matter is nobody is perfectly normal. We all have various types of characteristics, but one thing is for sure; none of us are the same and none of us are completely different."

~Joshua Miles Frase ~ 2009 ~ 15 years of age