News

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September 2017COLLABORATION WITH LEADING RESEARCH CHARITYIn collaboration with the renowned children’s medical research charity, Action Medical Research, we are announcing a joint £200,000 grant call…
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September 2017AN EXTRAORDINARY RUN IN THE SUNFilta Alta Madness arrange a second run inspired by Lluc…
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August 2017THANK YOU CHRISTIE & COThe latest fundraising news from our friends at Christie & Co…
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August 2017AAMINAH & RAABIAH’S FIRST 10K RUNInspired by Hasnain, the duo undertook the London 10k run…
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August 2017ANNIE INSPIRES HER SCHOOL FORM TO FUNDRAISEAnnie and her form mates fundraise in memory of Nathanie…
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July 2017CATMOSE COLLEGE NON UNIFORM DAYInspired by Milosz, students dress down for the day…
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July 2017STUDY OF AFFECTED FEMALE CARRIERSFrench study published on largest ever cohort of x-linked female carriers…
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June 2017PATIENT ORGANISATIONS MEET WITH AUDENTESThe focus of the meeting was to better understand the drug development process and to discuss how best to communicate information…
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Welcome

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"