18th April 2014 Please join us for our third European Family Conference, London 2014 We are delighted to announce our third European Family Conference which is being held in London on June 12th 2014. The family conference is free-of-charge, and we welcome anybody whose life has been affected by any form of myotubular and centronuclear myopathy. see the agenda and book here
4th April 2014 Top marks for 9SJR's school garage sale!A big thanks to Form 9SJR at Emanuel School for their fantastic Charity fortnight, which saw all members of the class participating in a small but brilliantly ambitious Garage Sale to help raise funds for Myotubular Trust read more
23rd March 2014 Adam's Liverpool half marathon, with Zak on his t-shirt Our congratulations and thanks to 18 year old Adam Allright for completing his first Liverpool Half Marathon, helping to raise an incredible £400 for the Myotubular Trust. Adam was inspired to run this event, because his life-long friend, Zak, has myotubular myopathy. Adam and his family have been fantastic supporters of the Trust since it was set up in 2006. read more
22nd March 2014 Our golden girl, Natalie Anderson, wins in ITV's 'All Star Family Fortunes' Emmerdale Actress, Natalie Anderson and her champion family members recently won £10,000 in ITV’s All Star Family Fortunes to help family friend Harry, who has myotubular myopathy. Natalie and her family were playing against the Olympic gold medallist and sporting legend, Sir Steve Redgrave and his family.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