19th July 2014 Fun Day at The Horse & Farrier helps the Trust reach their Crowdfunder target! To help the Trust raise funds for their Crowdfunder appeal, Ashlee Myers and Hayley Beck whose brother Harry has Centronuclear Myopathy, decided to have a Fun Day at a local pub, 'The Horse & Farrier'. The event was an all round success. read more
18th July 2014 Thanks to everyone who helps us reach our Crowdfunder appeal target We are delighted to announce that today, we reached our Crowdfunder appeal target of £4,400 to help pay for the recent Family Conference. We would like to thank everyone who kindly donated to this appeal. read more
14th July 2014 Myotubular Trust Family Conference Weekend, in London Myotubular Trust's third European family conference took place yesterday, on Saturday 12th July 2014 in London involving families and researchers from sixteen different countries. The conference provided something for everyone affected by myotubular and centronuclear myopathy, and was a very uplifting day. read more
10th June 2014 Lauren's college cake sale 'for change' A very big thank you goes to Lauren Hurst who with the help of her friend Sarah, and all the staff and students, raised a wonderful amount of money by a cake sale at Oldham Sixth Form College. Lauren’s fundraising was in honour of Joshua and to help make a change for children affected by myotubular myopathy. read more
2nd June 2014 Errol’s 'Wolf Run' as Woody is in recognition of William!In spite of planning his wedding and getting married soon, Errol has taken on several challenges to raise funds for the Myotubular Trust, and in recognition of William, the son of a family friend. The first of his events, the 'Wolf Run' was a huge success. 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