News

------------------------------------------------------

July 2017STUDY OF AFFECTED FEMALE CARRIERSFrench study published on largest ever cohort of x-linked female carriers…
read more

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…
read more

June 2017JUNTOS SOMOS FUERTESFundraisers in Spain join forces to pedal together for strength…
read more

June 201710K, 10 BRIDGES LONDON WALKOver 70 supporters joined us for this year’s sponsored Hope Walk.  A great day was had by all…
read more

June 2017RAY’S FIRST HALF MARATHONInspired by Joshua, Ray Lewis ran the Manchester Half Marathon in support of the Trust…
read more

June 2017BEN NEVIS AND THREE PEAKSGood luck to the Christie & Co climbing teams this weekend…
read more

June 2017PODCAST INTERVIEW WITH DR JAMES DOWLINGDr Dowling explains potential treatment for xlmtm in Myotubular Trust exclusive interview…
read more

May 2017GUY MARTIN RAFFLE PRIZES TO BE WONA great opportunity to win signed Guy Martin memorabilia, inspired by Matthew…
read more

 

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"