Myotubular Trust was set up in 2006 to become a respected funder of world-class peer reviewed medical research, in order to contribute to finding a treatment for myotubular and centronuclear myopathy. Our goal was to become proof of principle funders, a role which is often sadly lacking for very rare conditions. We also support families and patients from the challenging early days of diagnosis and life adjustment, through the many other aspects of living with this rare and life challenging disease. Our research funds are raised by the families, communities, colleagues and friends of families affected by the condition, and our running costs are 100% paid for from other sources, so that we can commit all family and patient raised funds to research.
