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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Recent Research

News and updates from our scientific community
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2025 LIVERPOOL HOPE WALK

The first Liverpool Hope Walk took place on Sunday 14th September
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THE LONDON 2025 HOPE WALK

Our annual London Hope Walk took place on Saturday 20th September
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Latest News…

Patient Registry

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