Fighting Disease

All aboard the Rotary fun bus for DEBRA

All aboard the Rotary fun bus for DEBRA

Rotary members in Surrey decided to pursue a different way of fundraising for DEBRA – the national charity that supports individuals and families affected by Epidermolysis Bullosa (EB).

It was all aboard the 353 bus for a Rotary fundraiser with a difference.

Thirty Rotarians, their partners and friends boarded the old-style green double-decker bus at Kew Green in Surrey for a tour to Richmond’s five Rotary clubs.

The event was organised by Richard Ward, President of Kew Gardens Rotary, to raise funds for the charity DEBRA.

They gathered outside the Coach & Horses Hotel on Kew Green at 9.30am and returned on the green double-decker five and a half hours later having visited five clubs and raising ÂŁ500 for the charity.

Children with this condition are called butterfly children because their skin is as fragile as a butterfly’s wing.”

Simon Douglas Lane was one of those who took part. He said he first became aware of epidermolysis bullosa (EB) when a speaker from DEBRA visited the club.

“EB is a genetic disease I had never heard of, which causes the skin to blister and tear at the slightest touch,” explained Simon.

“Children with this condition are called butterfly children because their skin is as fragile as a butterfly’s wing.

“When the skin is damaged, painful open wounds and sores form, and in many cases, internal linings and organs are affected.

“Secondary infections and extensive visible scarring are commonplace. EB is fatal in infancy and certain forms of EB are life limiting.

“There are 5,000 people in the UK who suffer from this condition and it affects not only the sufferer but their families as well.

“Both parents can carry the gene without displaying the condition themselves. If the gene is carried by either parent, the chances of passing the condition to a newborn child is 50%.”

The 353 fundraising bus

Simon continued: “There is no known cure for EB: the charity focuses on funding research to change this, whilst providing support for sufferers and their families by providing respite care and enhancing the quality of the children’s shortened lives.

“The children die young because they cannot receive adequate nutrition through blistering in the pharynx and oesophagus. They are also in constant pain.

“My Rotary club continues to support DEBRA, as do I.”

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