News

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11th November 2014 Team MTT's Hever Castle Triathlon For some of them it’s the first triathlon, for most of them it’s the first time they raise funds for the Myotubular Trust …for all of them it’s a moment of great joy. They said "let’s do it again next year …with a much larger MTT team. Thank you Myotubular Trust for giving us such a great opportunity, our hearts are with our little friend Tom – still our great inspiration." A big thanks to Marco, Mark, Richard, Anthony and Paul. read more

13th October 2014 Errol's wild and wolf runs as 'Woody' are for William Errol Brown has taken part in yet another run for William, once again dressed as his friend's favourite movie character 'Woody' from Toy Story. He ran the Vision Wild Run just recently and is set to run another Wolf Run in November. We would like to thank Errol for everything he is doing in recognition of William and for helping to raise so much awareness and funding for the Trust read more

5th October 2014 New breakthrough in understanding the mechanism behind a gene responsible for the development of centronuclear myopathyA novel protein N-WASP has been discovered to be regulated by the gene BIN1, and a team of scientists, led by Dr Edgar Gomes, have shown that the activation of N-WASP has reverse the effects of CNM in vitro. This suggests that N-WASP could be a new therapeutic approach for the treatment of CNM in people.read more

21st September 2014 Mermaid crews help us on our voyage to 'find strength', in Daniel's honourThe vessel, Mermaid Endurer, was out working when Steve Luther received an e-mail to inform him that due to their excellent safety figures their company, Mermaid Offshore Services, would be donating £900 to their chosen charity. On realising this figure would benefit children with myotubular myopathy, which had personally affected a member of Steve's own family (Daniel) this amount was generously matched -funded by the kind Mermaid crew members and Bibby Line Group, read more

 

Welcome

Myotubular Myopathy is a rare muscle condition which affects mostly boys at birth, and sometimes an even rarer form develops later in life affecting both boys and girls. It causes profound muscle weakness. Most critically it affects the muscles that control breathing and swallowing and is a constant threat to life - even a simple cold could prove fatal. Sadly many do not survive their first year of life*.

Like all rare diseases it is very difficult to attract research funding for Myotubular Myopathy, despite the severity of its impact on the children affected. The Myotubular Trust has been set up to raise funds and begin the process of finding a cure.

The Myotubular Trust constantly aims for 100% of all funds raised by our supporters to go directly towards research, to help find a cure or treatment for children with myotubular myopathy**.

Join us for our 2013 Candlelit Christmas Concert Read family stories

*source: Orphanet Journal of Rare Diseases. Centronuclear (myotubular) myopathy"
** achieved every year to date and to latest accounts at 31 December 2012