News

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May 2016MAY THE FORCE BE WITH YOU Inspired by his son Lluc, Àlex uses his talents to illustrate a series of custom posters of brave fighters - the MTM Fighters - in the style of Starfighter pilots…
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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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March 2016YEAR 10 STUDENTS INSPIRED BY MILOSZ Form 10O at Catmose College were inspired to fundraise for the Trust after their tutor, Michael Leski, shared the story of his little hero, Milosz……
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March 201650TH BIRTHDAY DONATIONSIn support of his son, Diego, Javier Alfaro asked guests at his party to make a donation to the Myotubular Trust to mark his birthday…
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February 2016REGISTRATION FOR THE EUROPEAN FAMILY CONFERENCE 2016 NOW OPENMyotubular Trust and ZNM are delighted to announce that you can now register for the European Family Conference
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January 2016MYOTUBULAR TRUST CELEBRATES 10 YEARSIn 2016 we celebrate 10 years of fundraising, family support and funding excellent research. Thank you to everyone who has made this possible.

November 2015BOURNEMOUTH MARATHON IN MEMORY OF WILLTwo longstanding supporters, Duncan Collins and Roberta Taylor, took part in the Bournemouth Marathon in memory of Will…
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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"