News

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May 2017GUY MARTIN RAFFLE PRIZES TO BE WONA great opportunity to win signed Guy Martin memorabilia, inspired by Matthew…
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May 2017THANK YOU FAIRWOOD BOWLS CLUBNewly amalgamated bowls club inspired to fundraise in memory of little Archie…
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April 2017LONDON MARATHON 2017Massive congratulations and thanks to our wonderful London Marathon runners, Rachel and James…
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April 2017FIRST EVER CLINICAL TRIAL APPROVEDGene therapy clinical trials for x-linked myotubular myopathy have been approved by the FDA…
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March 2017LATEST NEWSLETTER FROM MYOTUBULAR TRUSTBringing an end to our 10th anniversary year, we celebrate the many things you have helped us to do…
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March 2017RECENSUS study data announcedAudentes Therapeutics announces presentation of data from medical chart review of 112 patients with myotubular myopathy…
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March 2017OPTIMAL STANDARDS OF CAREExperts come together to develop international consensus guideline for airway clearance techniques for neuromuscular conditions…
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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"