How we make a difference

Myotubular and Centronuclear Myopathy cause life-threatening muscle and breathing weakness in infants and adults. But with a little help, they can live lives that inspire us...

Since 2006 we have invested in pioneering global research to find a treatment or cure, leading to us seeing the first patient trials...

We help the ‘here and now’ empowering patients and their families with latest best practice and shared patient experiences to discuss with their doctors...

We want to thank you, for making it happen!

 

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WHAT WE DO

Changing the course of the conditions
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Factsheets

Perspectives from parents and professionals on the conditions
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HELP BY BECOMING A FUNDRAISING HERO?

It is only with your help that we are able to continue funding research. Thank you!
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Recent Research

News and updates from our scientific community
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Latest News…

Patrick’s Manchester half marathon

Patrick’s Manchester half marathon

Patrick became a huge supporter of the Myotubular Trust having been barber to a young boy, Joshua, who had myotubular myopathy.  In Patrick's own words, "Knowing Joshua literally changed my life. " Following Joshua's death, Patrick, who...

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10k run in honour of Nathaniel

10k run in honour of Nathaniel

2026 marked the year that Nathaniel, who had myotubular myopathy, would have turned 18. In honour of Nathaniel and to mark the milestone, Nathaniel's dad, Jonathan, big sister, Annie, half brother, Aneurin, and Lisa ran the Bryn Meadows...

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Patient Registry

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