January 2018CLINICAL TRIAL REPORTS POSITIVE PRELIMINARY RESULTSAudentes Therapeutics announced interim data from first dose cohort on gene therapy clinical trial… read more

December 2017£35,000 RAISED IN 2017Christie & Co has raised over £35,000 for us in 2017!… read more

November 2017 DYNAMIN, A THERAPEUTIC TARGETPublication in Journal of Clinical Investigation clarifying breakthrough link between forms of centronuclear myopathy, including implications for preventing several types of myopathies… read more

November 2017RESPIRATORY CARE DAYWorld experts Royal Brompton Hospital announce a respiratory skills update date on 17 January 2018 for myotubular and centronuclear myopathy… read more

November 2017THE CHRISTIE & CO HOSPITALITY TEAM'S ONLINE CHARITY AUCTIONPlease feel free to bid for some great prizes, until 1.12.17 - generously donated by the team’s contacts within the Hospitality industry.


November 2017LICENCE OF ANTISENSE DRUGDynacure & Ionis Pharmaceuticals announce licensing agreement to target dynamin 2 for the treatment of a number of forms of centronuclear myopathy .…
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October 2017GRANT AWARD ANNOUNCEDDr James Dowling is announced as recipient of 2017 Myotubular Trust research award.…
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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"