News
------------------------------------------------------17th January 2012Second Will's Day A Success Nans Sue and Donna organise a fantastic fun-filled day to support grandson Will.
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13th January 2012See a Webinar on Scoliosis Watch the Webinar, download questions and answers and read personal stories about Scoliosis.
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18th December 2011 Candlelit Christmas Concert Candlelit Concert is a glittering success, with the help of some Star celebrities.
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16th November 2011 Our Christmas Shop Is Open Buy Sukhi-Lou's Just Jewellery; internet shop at High Street Stores and more!
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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.
100% of all funds raised by our supporters 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"
