Raising funds and awareness for EB

Raising funds and awareness for EB – the deadly skin condition affecting children.

Four marathons in three days

I am a Surrey Mason, Upper Thames 6138 as well as the Engineering Contracts Manager, UK & Ireland at The Rezidor Hotel Group and will be pushing myself to the limit to raise funds for a little known skin condition called Epidermolysis Bullosa (EB).

This is a group of genetic skin conditions that cause the skin to blister and tear at the slightest touch.

Will you help me to raise £10,000 for DEBRA, the charity committed to finding a cure?

I have signed not only for a 52km marathon hike on the Isle of Wight at the beginning of May but also will take on the fearsome Iceland Challenge in July.

In Iceland, I will be climbing the equivalent of Ben Nevis at a minimum speed of 4km per hour on the first day and the equivalent of Scafell Pike on the second day.

I want to do something to help children who suffer so much from EB, which is sometimes referred to as the worst condition you’ve never heard of. This small charity needs all the help it can get and the money I raise will help to underpin urgent research for a cure, hopefully in the next few years, if sufficient funds are found.

About EB, ‘the worst condition you’ve never heard of’.

I learned about EB through a colleague at work, whose four-year-old DEBRA Logodaughter suffers from one of the most severe types of the condition.

Those born with EB have skin so fragile they are called ‘butterfly children’ – their skin is quite simply as fragile as the wing of a butterfly.

Painful open wounds and sores form where this exceptionally fragile skin is damaged – in many cases, internal linings and organs are also affected. Complications as a result of secondary infection and extensive scarring are factors that people living with EB often have to face.

Tragically, certain types of EB can be fatal in infancy and others are severely life-limiting. We estimate that there are more than 5,000 people living with EB in the UK, and 500,000 worldwide.

There is currently no known cure for EB. At DEBRA, their work includes funding research to change this, while also supporting people living with EB to enhance their quality of life through improved healthcare, access to information and respite care.

To the limit

I will be pushing myself through the pain barrier on the four marathons. I still suffer from the effects of a cliff fall 30 years ago that left me with a broken back, which means I have to wear a brace when needed. I also have to contend with knee problems that have already required six operations.

But I think the pain will be more than worth it, if I reach the £10,000 target. In 2014 I completed a sponsored 100km walk through some very tough terrain in Vietnam, raising funds for Help4Heroes as well as completing the Isle of Wight coastal way challenge in the same year for the same charity.

My fundraising page is: https://give.everydayhero.com/uk/shane-willmoth

Thank You

Bro & Comp Shane Willmoth


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