November 2015NEWLYWEDS FOREGO WEDDING GIFTSCarlos and his bride, Cristina, asked friends and relatives to donate to the Myotubular Trust in support of Diego...
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Oct 2015MATTHEW INSPIRES THE BANKMyotubular Trust chosen by the Bank of England as their Chairty Of The Year
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Oct 2015SARAH GETS MUDDY TO FUNDRAISESarah Bowman completed the Pretty Muddy Race for Life to raise sponsorship for Myotubular Trust and Cancer more

Oct 2015FUNDING TO ADVANCE AAV GENE THERAPYAudentes Therapeutics Raises $65 Million In Series C more

Oct 20152015 MYOTUBULAR TRUST GRANT AWARDS ANNOUNCEDThanks to the support of our families, friends and community, the Myotubular Trust is delighted to announce two new grant more

Sep 2015ORPHAN DRUG STATUSAudentes Therapeutics receive orphan drug designation for AAV001 for the treatment of X-Linked Myotubular Myopathy in the US and in more

Aug 2015A VERY SUCCESSFUL GOLF TOURNAMENTWe are running out of ways in which to thank Dave Blunsdon and Karen Vardy for organising the annual Jack Blunsdon Memorial Golf Trophy in memory of their son, more



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 9 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.

Read about Research funded by the Myotubular Trust Read family stories

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