EB, also known as ‘butterfly skin’, is a rare, extremely painful, genetic skin blistering condition. It causes skin to become very fragile and tear or blister at the slightest touch. DEBRA is committed to finding effective treatments to lessen the day to day impact of EB, and ultimately find cures to eradicate EB.

The entire NFDC national council was humbled and moved by the recent BBC News coverage of football legend Graeme Souness’ fundraising campaign for DEBRA. Souness spoke passionately about what he described as the ‘cruellest disease out there’, and his plans to swim the English Channel to raise awareness and funding to help DEBRA stop the pain of EB. When the motion was brought to the meeting of the council, officers voted unanimously to support such a worthy cause. Representatives of DEBRA and families affected by EB will be attending the official opening of the new NFDC & NDTG offices in Hemel Hempstead, where they will be presented with a cheque for €11,700.

Tony Byrne, DEBRA CEO commented: “Everyone at DEBRA and within the EB community in the UK is extremely grateful to the NFDC for their kind donation. Our vision is for a world where no one suffers from EB and our mission is to provide life-long care, while seeking cures, for all those affected/impacted by EB. With support like this from the NFDC, we will be able to accelerate our drug repurposing programme, fund life changing treatments, and continue to provide the EB community support and healthcare. Thank you NFDC.”

Later this month NFDC president John Lynch will attend the House of Commons reception for DEBRA. The event will celebrate the hard work of DEBRA and its fundraising partners, as well as hearing from Members of Parliament and a professor of dermatology from the University of Manchester.

The NFDC has a long history of charitable giving, with member representatives regularly undertaking fundraising challenges including the London Marathon, which the NFDC has supported consistently since 1993. In recent years, charitable donations made by the NFDC have averaged approximately €292,000 per annum.