7th May 2013 Team Milosz Conquers Tough Mudder Challenge For Milosz We would like to thank Ian, Peter, Mark, Matt and Rich who took part in a gruelling challenge on Saturday 4th May for four year old Milosz who has recently been diagnosed with myotubular myopathy read more
25th April 2013Thanks To Our Million For William Supporters Inspired by William who has myotubular myopathy, mum Adele, dad Keiron and big sister Rhianon have set off to a flying start by raising over £3,000 already for Myotubular Trust and other charities close to their hearts. read more
15th March 2013 Join Us For Hope Walk Weekend,18th and 19th May We would love you to join us on one of our organised Hope Walks in London, Oldham and Devon on 18th and 19th May 2013. Or why not organise your own in your area? 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.
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**.
*source: Orphanet Journal of Rare Diseases. Centronuclear (myotubular) myopathy"
** achieved every year to date and to latest accounts at 31 December 2012