Pursuing a Cure for
Myotubular Myopathy
The Joshua Frase Foundation is an organization with two main goals: To find a cure or treatment for Myotubular myopathy and to support families who’s lives are affected by congenital myopathies.
For over sixteen years we have been raising funds to support research in hopes of finding a treatment and/or cure for Centronuclear Myopathies. Over the past decade, we have assembled a team of leading researchers from a variety of fields, combining their respective areas of expertise into a multi-faceted approach, aimed at understanding how and why the body responds to Myotubular myopathy so that effective therapies can be formulated.
While we pursue a cure for CNM and MTM, we are also dedicated to supporting families who struggle with the realities of MTM. 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. They 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 for 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.
"Destiny commands, We must obey"
Winston Churchill