27th March 2015 Jungluth & Gautel publication New paper published summarising developments in the understanding of the genetic causes and the muscle and cellular defects of myotubular and centronuclear myopathy. read more
26th February 2015 House of Commons Reception On Thursday 26th February, during Rare Disease Week, the Myotubular Trust were honoured to have held a fundraising reception at the House of Commons. It was a very happy evening, with great support from friends old and new. read more
2nd January 2015 Capgemini cake and bake sale This December, Richard and Kirsty held a bake and cake sale at their offices in aid of Myotubular Trust. 40+ Cupcakes, 12+ Corned Beef Pasties Slices, 10+ Steak & Ale Pies...the great news....they all sold. Overall, it was a great morning, even though it is only a small office, everyone got behind the wonderful work that Myotubular Trust do and supported the event massively.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