Myotubular myopathy is a rare and devastating muscle weakness, affecting mainly boys, from birth. These babies and children are at a constant risk of dying, and usually from complications due to simple colds and coughs from which they are literally too weak to recover. Most do not survive their babyhood or early childhood, and very sadly only 1% makes it to 10 years old.Our goal is to help fund research to find a treatment or cure for myotubular myopathy, giving children a real chance of living.The positive news is that there are recent and major breakthroughs in the world of muscle disease and that means there is real hope of a cure. Since the Trust was founded in 2006, over £2,000,000 has been raised and twelve exciting and promising research grants have been awarded by the Myotubular Trust.
Charity No: 1137177
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