About the Myotubular Trust

Our Goal

'The relief of disability and the extension of life for those suffering from myotubular myopathy, by promoting the study of, and research into, the treatment and cure of the muscle weakness caused by myotubular myopathy'

Our goal is to become a well known and respected source of funds for European researchers, the existence of which in itself may provide inspiration and focus for bright ideas.

We have set up our medical peer review process after a period of intense due diligence, in 2008 and we made our first call for applications for research projects in September 2008. We have ensured that the review process is nothing short of world class, therefore utilizing every penny donated to us in the best possible way. To read more about the very promising research we have funded, please read our Research pages.

With the huge advances in our understanding of genetics seen in recent years, Professor Francesco Muntoni, a world leader in neuromuscular disorders, is confident that new treatments and cures for Myotubular Myopathy may be on the verge of discovery. The most promising fields of research are stem cell therapies, which aim to improve muscle strength, and drug treatments, which aim to modify the chemical signalling of the cells so that they work better.

Ultimately, we wish to find a cure for myotubular myopathy.

Read the latest annual Trustee report here