Pursuing a Cure for
Myotubular Myopathy

The Joshua Frase Foundation is dedicated to supporting medical research for myotubular myopathy (MTM) and other related congenital myopathies. Ongoing research is needed to discover causes of and cures for this deadly disorder.

Rather than concentrating in only one area of study, we support a broad approach to research for myotubular myopathy. 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 MTM, we are also dedicated to supporting families lacking the resources for medical equipment needs. 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. We help fund the medical equipment, wheelchairs, ramps and support for families who cannot afford the costs.

In addition to monetary support, the Joshua Frase Foundation lends emotional support for families struggling with infants or children affected by any neuromuscular disorder, and we have helped create a network of individuals who stay in touch, stay informed and further research toward better treatment and an eventual cure.