Story
26.2 miles LonDONE. 3h51, a course best and a negative split. Well done to all of you below for a fantastic effort. The total raised so far is more than I dreamt of and I know DebRA will put it to good use. You've all done a great thing and will make a real difference to somebody somewhere.
If you still want to make a difference, there is time yet...Here's why:
If you have known me for a while you will know that my nephew Harry has EB. Harry is ten now. He doesn't complain, he doesn't want pity or sympathy. He gets on with life in a way that would put most of us to shame. But I know he would give anything to be able to kick a football around without knowing that every time he touches the ball he will suffer another blister which will mean he will not be able to walk the next day, and probably the day after. He lives with this pain every day, no respite and no hope of a cure.
If you know somebody with EB or you saw the C4 documentary 'The boy whose skin fell off' about the life of Jonny Kennedy, you will not need to read any further to be convinced why DebRA is such a great cause. If you didn't I'll explain.
DebRA is the only charity conducting research into and offering support to sufferers of Epidermolysis Bullosa (EB). EB is a very rare genetic condition in which the skin and internal body linings blister at the slightest knock or rub.
If you think about how many things touch your skin on a daily basis, including your clothes, and then imagine that that contact will turn into a painful blister. Now think about those blisters having to be lanced and dressed - a painful procedure taking up to three hours every day. Now you can begin, but only begin, to imagine the suffering that EB causes. There is currently no treatment and no cure. If you would like to find out more click here to visit DebRA
DebRA receives no funding from the Government or the NHS and their annual budget is less than some charities will spend in a day, but they work hard. £5 will buy a set of easy grip chunky pens to help children hold a pen when their fingers are fused together from repeated scarring. Every £25 will fund an hour of vital research bringing the hope of effective treatment a little closer and £75 will provide an EB Health Care Specialist for a day. On 25 April 2010 I will be running the Virgin London Marathon to raise money for DebRA. Seems the least I can do. In 2006 I raised over £3000 and that money really made a difference. Many of you generously donated then, and I need your help again.I know there is a recession, times are tough and money is short. But nobody told EB. It carries on, regardless. So please...dig deep and donate whatever you can spare. Cut out a takeaway, miss your morning latte, give up that bottle of wine or have a couple of beers less and give that money to DebRA. Every penny will make a difference that you and I can only imagine.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 DebRA and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. Even now DebRA need the money more than the tax man.
So please, do what you can...and thank you.