September 2016MANCHESTER FUNDRAISING Thank you to our supporters fundraising in Manchester in honour of Joshua
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August 2016PROMISING RESULTS Promising results of an ongoing Myotubular Trust grant published in high impact journal.
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July 2016CATALONIAN FUNDRAISER INSPIRED BY LLUC Jordi, Dani, Lluís and Gerard arranged "a minority race for a rare disease" which took place on Saturday 16th July in Catalonia, Spain…
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July 2016MARK'S DERWENT WATER EPIC SWIM Mark completes the 3.8km Derwent Water epic swim in honour of his lovely grandson, Reece…
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June 2016NICK'S LONDON MARATHON 2016 Nick Thomas ran the London Marathon in support of the Trust after it was chosen as one of his employer’s charities of the year…
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May 201610 BRIDGES FOR 10 YEARS A huge and vibrant crowd of supporters turned out for our 10 Year anniversary sponsored walk, crossing 10 iconic London bridges…
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Myotubular Myopathy is a rare genetic muscle condition that affects mostly boys from birth. The condition causes profound muscle weakness and most dangerously affects the muscles that control breathing and swallowing. Eighty per cent of children die before their first birthday. One per cent make it to ten years old*. For the last 10 years, the Myotubular Trust has lead the way in both supporting families and investing in research to find a treatment and a cure.

Now, thanks to our supporters, scientists the Trust has funded are on the verge of a breakthrough that could lead to a treatment for not only myotubular and centronuclear myopathy but other rare muscle diseases too.

Join us in changing the lives of the children and families who are affected by this rare disease. A cure or treatment is no longer a pipe dream - but only you can make it a reality.

This film has been made with the kind sponsorship of


Read about Research funded by the Myotubular Trust Read family stories

*source: Orphanet Journal of Rare Diseases. Centronuclear (myotubular) myopathy"