Hi there,

Thank you for visiting my fund raising page.

Three years ago, by chance, I saw a award-winning documentary on TV called ‘The Boy Whose Skin Fell Off’. This was a film about a unique guy called Jonny Kennedy who suffered from the horrendous skin condition EB Epidermolysis Bullosa – a genetic condition where the skin breaks at the slightest touch, causing painful, open blisters and wounds. EB means a life of extreme pain, disability and, at its worst it is fatal in infancy. There is still no known cure, although significant steps forward have been made this year towards a cure. Those of us involved in the charity and of course, the beleagured sufferers of the condition, are confident that more research will get us a cure.

The documentary was Jonny’s idea, as he wanted to raise as much awareness about EB as possible and therefore filmed the last 4 weeks of his life as he battled against the condition. Jonny showed extreme courage and determination and at times, great humour, even though his fate was sealed as his body was slowly succumbing to the ravages of EB.

Jonny was a truly remarkable man. So much so that he inspired me to run the London Marathon and raise much needed funds for the charity DebRA, which is charging forward to find a cure for EB. This is my 3rd attempt at the London marathon. The first year I completed all the training but had to pull out because of injury just before the race. Last year I completed the marathon and this year I am doing it again and want to shave off a full 45 minutes from my finishing time of last year - which is a huge challenge in itself.

If you can spare the time to look through the attached website you will find out more about the charity that I am trying to raise funds for.  Click on the "About EB and DebRA" tab to read more stories about the lives of sufferers.

www.debra.org.uk

If you feel as moved as I do then you too can help. I know the sufferers would be extremely grateful if you are able to sponsor me online. If you prefer to send a cheque that too can be organised, just drop me an email and I will help you out. I am also having a fundraising event on 20th April in London which you are also welcome to come along too - email me and I will send you details.

Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor me: DebRA will receive your money faster and, if you are a taxpayer, an extra 28% in tax will be added to your gift at no cost to you.

Thank you - together we will all make a difference, and find a cure!!

Rick

Thanks for visiting my fundraising page.

Donating through Justgiving is quick, easy and totally secure. It’s also the most efficient way to sponsor me: DebRA gets your money faster and, if you’re a UK taxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation.

So please sponsor me now!