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Edinburgh Marathon 2013 · 26 May 2013 ·

Our vision is for a world in which every mitochondrial disease patient has a voice and access to treatment, support to improve their life and, ultimately, a cure.

Story

I am running the marathon in memory of Baby Ben Vassiliou-Varney.

Our Friends Maria and Owen lost Ben 3 days before his first Birthday in May last year from a form of Mitochondrial Disease. As everyone will appreciate this is the worst thing that can happen to any family or parent.

The following Link explains Ben's Story so please take the time to read it.

http://www.hertfordshiremercury.co.uk/Cheshunt-and-Waltham/Goodbye-to-Cheshunt-baby-Ben-14062012.htm

Through funding research, The Lily Foundation aims to improve diagnosis and treatment of Mitochondrial Disease. Many parents are having to wait months and sometimes years before their child is diagnosed and even in the cases where a diagnosis is made, treatment options that may stabilise the condition and improve quality of life are limited, and not always effective.

Whatever you can give will help.

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