News
------------------------------------------------------29th July 2010
A Hearty Farewell At Shipbourne Schoolchildren and teachers at a village school donate their leaver's collection...
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21st July 2010
Happy 70th Birthday Ian A proud grandad celebrates his 70th birthday asking for donations, not gifts...
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15th July 2010
A Successful London 10K 2010 Big thanks to the many runners and supporters for joining the London 10K...
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9th July 2010
Hannah Clocks Up The Miles Hannah and her dad, Gary Hay, cycle 45 miles for donations in memory of Tom...
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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"
