News
------------------------------------------------------8th February 2010
Marek's Reading Run Marek
Pruszewicz
is running in this year's Reading half marathon in honor of Tom.
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4th February 2010
Thames Walk Date Announced Johanna and Lizzie set the date Saturday 8th May for the 20 mile Thames Walk....
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18th January 2010
Run The London 10K In 2010! Would you like to run for us this year? We have free running places to give away.
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13th January 2010
Lloyds Market Charity Awards
James Lee nominates our charity to receive £1,000 award...
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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"
