Brother Tony Byrne appointed CEO DEBRA UK
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After nearly 40 years working in the Corporate sector, and with several non-executive director roles in the charity and not for profit sectors, I recently took up a new role as CEO for a charity and a cause which is relatively little known about – but should be. The charity is DEBRA.
The cause is a condition called Epidermolysis Bullosa (EB) which is often described as the ‘worst disease you’ve never heard of’ or ‘butterfly skin’. It is an extremely painful genetic skin condition, usually diagnosed in early childhood, that causes the skin to tear or blister at the slightest touch. There is currently no cure. Sadly, it can be fatal. Although relatively little known, it is estimated that there are around 5,000 people in the UK currently living with EB – the same as better known conditions such as Motor Neurone Disease - and 500,000 worldwide.
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The name comes from ‘epiderm’ - the outer layer of skin, ‘lysis’ - the breakdown of cells and ‘bullosa’ - blisters.
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People with EB have a faulty gene, which means the skin cannot bind together. Any trauma or friction causes painful blisters which result in open wounds and severe scarring.
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It varies in severity from milder forms with blistering on the hands and feet causing problems with walking and other daily activities to more severe cases in which blistering can occur all over the body and on internal organs such as inside the mouth or the oesophagus (food pipe) making every day activities like eating and teeth brushing extremely difficult.
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It can also mean a higher risk of developing an aggressive form of skin cancer.
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The main challenge people with EB face, on a daily basis, is the pain and itching that occurs as a result of the blistering.
DEBRA UK is a charity founded over 40 years ago by a group of parents whose children had EB. The founder’s daughter’s name was Debra. Since then it has grown significantly and there are nearly 50 national DEBRA groups worldwide. DEBRA UK is still one of the leading groups, funding international collaboration and best practice, pioneering research into treatment and cure, providing training and specialist healthcare in partnership with the NHS and essential, life-long support for the EB Community through the services of the DEBRA Community Support Team.
The charity receives no government support. Its work is funded through the income raising network of charity retail shops across the UK, fundraising appeals and activities (many of them now online), legacies and the generosity of regular donations. Despite the effects of the pandemic, the charity is determined to survive and to raise funds to support essential research into a cure and treatments to alleviate the effects of this devastating condition.
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More information is available at the Debra website. Click here