The Joshua Frase Foundation exists for two purposes: to raise money to fund a cure for Centronuclear and Myotubular Myopathies and to support families on the day-to-day journey as they care for these medically fragile children.
Our #ChangeStartsWithOne 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. His parents, NFL veteran Paul Frase and wife Alison were told that 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 50% of the children born with Joshua’s disorder live to the age of two. Fewer still survive past their early school years. Joshua’s life will always be a reminder of how #ChangeStartsWithOn.
Today, they have raised over $6 million and their researchers are gearing up for clinical trials. The dream of saving lives is within reach!
In addition to raising money to fund a treatment or cure, JFF exists to support families around the globe who are affected with this disorder.
The Joshua Frase Foundation has been funding cutting edge research for Myotubular Myopathy and other related muscle disorders since 1996. We are forging a path in the neuromuscular disease space and we are closing in on clinical trials for this rare and fatal disorder. Please support our efforts and families on the day-to-day journey as they struggle to care for these medically critical children.
Always for the children.