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.
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