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raised by 131 supporters
Ewan Gordon avatar
Ewan Gordon

Amy and Friends Cockayne Syndrome Support

I am running and cycling myself silly for Amy and Friends because we need a cure for Cockayne Syndrome

raised by 131 supporters

Amy and Friends

Amy & Friends provide support for the health and well being of sufferers of Cockayne Syndrome and their families and carers. We provide an annual members retreat where families spend time in each other's company and meet leading doctors and researchers. We also provide a family support worker.

Charity Registration No. 1119746


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I met Thomas Laurie at Church about 5 years ago, Thomas Laurie suffered from Cockayne Syndrome and spent 9 years fighting this genetic condition. He sadly died on 19th February 2014 and I have dedicated all my running to raise awareness for Cockayne Syndrome and other family's with this life limiting condition.

I have run many Marathon's since I started running in 2011, the MK Marathon, Loch Ness Marathon, Reading Half, Oxford Half, Dirt Half, Liverpool Half, Brighton Marathon, Edinburgh, Chester and next year (2015) I intend to live out my dream of competing in the Rome and Florence Marathon's as well as running from John O'Groats to Lands End.

Like Forrest Gump, I run because I feel the need to and I will stop when my work is done, I will stop when they find a cure to Cockayne Syndrome, as yet there is no known cure.

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