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…

Hope, Walk and Help – Milton Keynes Hope Walk 2026

Hope, Walk and Help – Milton Keynes Hope Walk 2026

Our long term friends and supporters, Suri and Harvey, very kindly instigated our very successful first Milton Keynes Hope Walk in memory of their beautiful daughter, Sukhi, who had centronuclear myopathy. Amongst other things, Suri and...

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Patient Registry

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