Thanks for taking the time to visit my JustGiving page.
Until Cockayne Syndrome ("CS") was diagnosed within my family, I had never heard of it. I suspect many of you haven't heard of it either.
Very briefly, CS is a rare genetic disorder. Development is impaired to various degrees and sufferers have a shortened life expectancy. For a far more eloquent explanation of what it means to live with CS please watch this video by young Ellie talking about her brother's condition.
While there is so much still to be learned about the syndrome, Amy & Friends offers an invaluable support network to those touched by the illness within the UK.
Please read more about the Charity at their website: http://www.amyandfriends.org/
By sponsoring me in the 2010 Virgin London Marathon, you will be helping to raise funds for the Charity's annual retreat. Here children with CS can meet with other sufferers. Brothers and sisters, who often feel guilty because they don't have the illness, can share their
feelings with peers. Parents get a chance to share experiences, realise that they are not alone, and meet medical specialists from across the globe.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the Charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the Charity.
Please dig deep and donate now, and come back and check my training progress up to the big day!
