Joshua Frase Foundation
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 two decades, JFF has been forging a path for MTM/CNM in raising funds to support cutting edge research in hopes of finding a treatment or cure for centronuclear myopathies. Over the past decade, they 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. Great strides are being made in this space.