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Marathon man's challenging tribute to dead girl



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Published Date:
18 April 2008
A SOUTH Tyneside firefighter is hoping to blaze a trail on a gruelling charity challenge.
Simon Johnson, West Drive, Cleadon, will spend six days running up and down mountains in the Inner Hebrides.

The first race begins on the island Islay next month, and then the 31-year-old will be getting the ferry over to the island Jura. The run
is the equivalent to six marathons.

Mr Johnson will be raising money for the charity Debra, for people suffering from Epidermolysis Bullosa (EB).

The marathon man is not new to challenges after completing the Marathon Des Sables in the Sahara. His new challenge begins on the May 25.

He said: "The race is for six days and the longest day will cover 30 miles.

"I have being training by going to the Lake District and also running 20 to 30 miles along Hadrian's Wall.

"On these races I also have to carry my own back pack. You are completely self-sufficient – you have to carry your food, water, clothes, everything except a tent.

"On my last run I asked a fellow runner what charity he was running for. He told me about this little girl who suffered from EB. At the time I'd never heard of it and thought it was awful.

"So this year I thought I'd run for the girl but unfortunately she has passed away, so I looked up which charity helps and Debra have been doing it for a lot of years."

Mr Johnson added: "I say that every year will be my last, but I will probably be doing it again next year too."

EB is a rare genetic condition in which the skin and internal body lining blister at the slightest knock or rub, causing painful, open wounds.

People with the more severe types of EB also have exceptionally high risk of developing skin cancers, shortening their lives
by 30 to 40 years. There is as yet no effective treatment or a cure.

The most famous sufferer was Northumberland's Jonny Kennedy, who died in 2003.





The full article contains 349 words and appears in n/a newspaper.
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  • Last Updated: 18 April 2008 4:54 PM
  • Source: n/a
  • Location: South Shields
 
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Eric Duffield (Trustee),

Jonnykennedynortheast !5 Willow Avenue Fenham Newc 21/04/2008 19:39:45
Having read the article in the Shields Gazzette 18th April 2008.
Marathon's man challenging tribute to dead girl.
Simon Johnson of West Drive Cleadon is raising funds for the Charity Debra in memory of Mellisa who recently passed away with the genetic skin condition Epidermolysis Bullosa.
As a Northeast charity we also raise funds for the same condition only our aims are totally different from Debra.All funds that we raise is to help the sufferers of EB and continue to look after the welfare side.All monies raised through JKNE goes didectly to help fund Free Holidays,respite care and to purchase vital medical equipment not available on the NHS.We have also set up a website where all EB sufferers and their carers can communicate with us to tell us what their needs are.We also buy computers to allow this and just recently we have recieved a grant for £2000 which will enable the charity to buy at least 3 maybe 4 computers.One has already been purchased for an EB sufferer like jonny here in the Newcastle region.So hopefully Simon will consider raising funds for a Northeast Charity as Jonny Kennedy was a Northeast lad and without the Documentry "The Boy Who's Skin Fell Off" little would have been known about EB especially here in the Northeast region.
Our website address is www.jonnykennedynortheast.org.uk
All the details of who we are and the events we have planned for 2008 are also shown.Alt. if anyone wishes to contact the charity please do so by calling 07738076081 anytime.Thankyou
Kind reguards Eric Duffield (Trustee) Events Coordinator& Fundraiser
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