The Myotubular Trust

Aldersey Green

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.

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