News
------------------------------------------------------16th May 2012A Weekend Of Hope We would like to thank everyone for joining our Hope Walks in Oldham, Leeds, Bournemouth and London.
London Hope Walk
Leeds-Bradford Hope Walk
Oldham Hope Walk
Bournemouth Hope Walk
16th May 2012Floods Can't Stop Paul Running A Marathon Paul Le-Tallec endured floods and bad weather during a recent Milton Keynes Marathon - in Will's name. read more
10th May 2012Good luck to all our 2012 Hope Weekend Walkers From Oldham - Leeds - London - Bournemouth - a really big thanks to all our walkers. It's not to late to join in or plan your own!
8th May 2012Personalised ID bracelets, dummy rings and key rings Rachel is making personalised ID bracelets, dummy rings and key rings to help raise research funds read more
28th April 2012Join Our Respiratory Webinar Your opportunity to ask Professor Anita Simonds and Dr Michelle Chatwin of the Brompton Hospital London questions around respiratory management. read more
23rd April 2012Baking Booth Business Group Raise Dough Five students from Hertfordshire University sell cakes to raise research funds. read more
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.
100% of all funds raised by our supporters go directly towards research, to help find a cure or treatment for children with myotubular myopathy.
*source: Orphanet Journal of Rare Diseases. Centronuclear (myotubular) myopathy"
