News

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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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May 2016MAY THE FORCE BE WITH YOU Inspired by his son Lluc, └lex uses his talents to illustrate a series of custom posters of brave fighters - the MTM Fighters - in the style of Starfighter pilotsů
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April 2016CONFERENCE AGENDA ANNOUNCED Panel of the world’s leading researchers announced as presenters for Family Conference, Frankfurt, Germany, 6th & 7th May……
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Welcome

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"