What does the word ‘challenge’ mean to you?
We might be challenged by a client to make a certain budget fit their end vision, or challenge outwards with a creative idea to push the envelope. A challenge could constitute the scaling of an outrageously high mountain, running or cycling an uncomfortable – or seemingly overwhelming – distance, facing a fear or a fight. The thing about a challenge is that it can be small or large, but ideally not a daily occurrence. Certainly not for something that we would ordinarily take for granted, like getting dressed, eating or drinking.
Yet that’s the type of challenge faced by an estimated 5000 people in the UK, at the hands of a rare and debilitating condition called Epidermolysis Bullosa (EB) which causes the skin to blister and tear at the slightest touch. Truly the absolute worst condition you’ve never heard of, there are three main types of EB: EB Simplex (EBS), Dystrophic EB (DEB) and Junctional EB (JEB), each is defined by how deeply into the skin the blistering occurs. It can affect sufferers both externally and internally; causing a narrowing or blistering of the oesophagus, resulting in extreme discomfort and making even swallowing a challenge.
Jellybean MD, Fiona, has long been a supporter of, and fervent fundraiser for, DEBRA, the national charity that supports individuals and families affected by EB, creating awareness both outwardly and across the agency of the fine work it does.
Which brings us neatly onto our own challenge. On 30th July 2017 – egged on by Fiona – a team of four Jellybeans; myself, Laura, Sam and Neil, will take part in the Prudential Ride London cycle – 100 miles around the streets of London and leafy roads of Surrey, finishing at The Mall in London some seven hours later. Every penny raised of our £4,000 target will go towards furthering the work of DEBRA as Jellybean continues its proud patronage of the charity.
With the team firmly in training, every revolution brings us closer to overcoming our own personal challenge. But a few hours of struggle is nothing compared to the pain experienced daily by sufferers of EB.
With medical research in its twilight, a cure could be within touching distance but we and DEBRA need your help to get over the line.
So consider this our challenge to you. Please visit our JustGiving page www.justgiving.com/fundraising/jellybeancs and donate to the cause so we can do something to help.
All donations, no matter how big or small, are massively appreciated.
To find out more about DEBRA visit: www.debra.org.uk