MTM CNM patient organizations
Below you will find a list of all patient organizations and support groups that cover Myotubular and CentroNuclear Myopathy. This list deals exclusively with MTM and CNM, while organizations that deal with all neuromuscular diseases including MTM and CNM are listed on the following page.
United States of America
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.
Dedicated to connecting families impacted by Myotubular Myopathy and Centronuclear Myopathy (MTM/CNM) with each other, and with the leading medical and research professionals from around the world.
Myotubular Trust is the only charity in Europe raising research funds into myotubular myopathy and the only charity providing specific support and contacts for this condition in the UK. It was founded in 2006, by two mothers of boys with myotubular myopathy and remains very much a patient led organisation.
They provide a point of contact for families across Europe and worldwide, giving them access to information on advances in understanding the condition, and the latest research. They work closely with these affected families helping them to share experiences and knowledge, both informally and through family conferences.
Over £1M has been raised for research, all through families affected by this condition and their extended communities and leading edge research projects have been funded in world-class laboratories around Europe. The Trust launched a Patient Registry in 2013, the first international database specifically created to gather data on those affected by myotubular and centronuclear myopathy, so that when clinical trials and other medical breakthroughs become available, patients who will benefit from this research will be located more easily by researchers.
“..charities like the Myotubular Trust have great value. The money makes a huge difference.” Professor Francesco Muntoni, Head of the Paediatric Neuromuscular Centre at Great Ormond Street, Myotubular Trust Scientific Advisor.
The Information Point, established in 2001, is a source of information and support for Myotubular and Centronuclear myopathy.
Founded by Toni Abram, herself diagnosed with Centronuclear myopathy the Information Point is comprehensive guide to these conditions. In addition the organisation is responsible for the "Big Sunflower Project" an initiative to raise awareness.