CROWTHORNE charity DebRA has raised an estimated £80,000 towards its vital work at a luxurious 30th anniversary fundraising dinner.
The national charity, which supports families and individuals living with the devastating skin blistering condition epidermolysis bullosa (EB), was founded in 1978 and in this special year it held its annual dinner at London’s historic Mansion House.
The charity was honoured to receive a personal invitation to The Mansion House by The Rt. Hon. the Lord Mayor of London Alderman David Lewis.
The Mansion House is the official residence of the Lord Mayor and dates back to 1753. The Lord Mayor was moved to help DebRA when he heard that the charity relies on donations from the public.
He said: “EB is simply dreadful and I am amazed that the Government are not helping to fund research into its cause or even into alleviating the awful pain which comes from skin which will blister and shear at the slightest friction.”
The black tie event included a special auction with items such as House of Commons whiskey signed by the current and previous three Prime Ministers, a box at Neil Diamond’s concert in London, a Kenyan safari and a dream holiday in Mauritius.
DebRA CEO Ben Merrett said the event was a great success. He said: “It was wonderful to see so many loyal DebRA supporters at our 30th Anniversary Dinner.
“2008 is a special year for DebRA and the charity has come a long way in 30 years. Back then there was no specialist care or support for EB families and there was little knowledge about this terrible condition. DebRA’s work in the past 30 years and the research it has commissioned has made an enormous difference to the quality of life of those with EB and we want to continue to make that difference. This dinner was a chance to celebrate our achievements and to look to the future.”
EB is a genetic condition in which the skin blisters and shears at the slightest friction, or even spontaneously. Approximately 5,000 children and adults in the UK were born with the condition, with around 500,000 people living with EB worldwide.
DebRA funds specialist nurses and social care workers to work directly with families in the UK. The charity also commissions world-leading research with the aim of finding effective treatments and ultimately a cure for EB.
