Five Clubs Bus Trip Excursion.
DEBRA Charity Event with the Five Rotary Clubs in the London Borough of Richmond
EPIDERMOLYSIS BULLOSA(EB) DEBRA CHARITY EVENT WITH THE FIVE ROTARY CLUBS IN THE LONDON BOROUGH OF RICHMOND: 27TH APRIL 2019
I first became acquainted with EB when a speaker came to my Rotary Club (Twickenham) to talk about a genetic disease I had never heard of. EB is a condition which causes the skin to blister and tear at the slightest touch. 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. 5000 people in the UK 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 new born child is 50%.
There is no known cure for EB: the charity focusses on funding research to change this, whilst providing support for sufferers and their families by providing respite care and enhancing the quality of the childrens’ 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.
DEBRA is entirely funded by charitable donations and so this bus trip on 27th April was organised by Richard Ward, Kew Gardens Rotary Club President, to raise funds for this wonderful charity. My Rotary club continues to support DEBRA as do I.
So, in somewhat chilly conditions, over 30 Rotarians and their partners and friends, having prepaid for the trip and breakfast in advance, gathered outside the Coach and Horses Hotel, Kew Green at 09.30, boarded my Green Double Decker, and we went on an extended pub crawl to the meeting venues of the various Richmond Borough Rotary Clubs, starting with a 10 a.m. breakfast at my Club’s meeting place in Twickenham. 4 venues later we returned to the Coach and Horses at 3.00 p.m. This unusual fellowship and fundraising event enabled members of 5 local Rotary Clubs to meet each other in relaxed surroundings and raised over £500 for DEBRA. My thanks to all concerned.
Thank you Rotary: you can go onto the DEBRA website to find out more.
Every good wish, PE Rtn Rev’d Simon Douglas Lane.
All the photos can be found HERE!