DEBRA launches £5m fundraising appeal to stop the pain of EB
DEBRA, a national charity, and patient support group for people living with Epidermolysis Bullosa (EB), a devastatingly painful, genetic skin blistering condition, is launching, ‘A Life Free of Pain’ its largest ever appeal to fund the clinical trials that are so desperately needed to deliver treatments that will free people from the pain of EB.
The appeal, which launches during EB Awareness Week – October 23rd, features members of the EB community sharing their lived experiences of this debilitating condition and the day-to-day challenges it creates. People like 15-year-old Fazeel from Croydon (pictured below) who is living with Recessive Dystrophic EB, a mild to severe form of EB which accounts for 25% of all EB cases.
EB is a rare and largely unknown skin condition which causes the skin to blister and tear at the slightest touch resulting in excruciating, never ending pain. With skin as fragile as a butterfly’s wing, it is often referred to as ‘Butterfly Skin’. EB can affect the hands and feet only or in the most severe cases any part of the body, including blistering on the eyes and internal organs. Currently there are no approved treatments for EB and in the most severe cases it can be fatal.
Fazeel identifies pain and itch as the worst aspects of EB:
“The pain is incredible. I take so many painkillers every day. Then there’s the itch. Some days there is no itch at all and sometimes I have days where I just can’t stop itching. My skin scarring, the fusion of my fingers, and the depletion of my skin tissue all increase as I get older, which will only make life even harder for me. That’s why I want to find a cure for EB if DEBRA hasn’t found one by the time I’m old enough to be a doctor. I want everyone to understand what having EB really means”.
The objective of the appeal is to secure funding to find treatments that will enable people like Fazeel to live free from the pain of EB. The £5m will contribute:
- £3m to accelerate the DEBRA drug repurposing programme which will involve testing drugs which already successfully treat other inflammatory skin conditions such as Psoriasis and Atopic Dermatitis. These drugs are already available within the NHS, and we believe they could be effective in slowing, stopping, or reversing, the progression of EB.
- £1m to fund life-changing treatments including eye lubricants, oral sprays, and topical treatments that are applied to wounds, all of which could radically improve quality of life for people living with EB.
- £1m to enable DEBRA to continue to provide EB community support and healthcare whilst we seek effective treatments.
The appeal, which will include a calendar of fundraising activities, and a dedicated lobbying campaign and awareness event within the House of Commons, will be supported by DEBRA’s network of 100+ charity shops, our President, British Army and Falklands War veteran, Simon Weston CBE, our Royal Patron, HRH The Countess of Wessex, and VPs, Scottish former professional football player, manager and current Sky Sports pundit, Graeme Souness, and world-renowned boxing manager and promotor, Frank Warren.
Commenting on the launch, Tony Byrne, DEBRA UK CEO said “I have seen first-hand the extreme pain this devastating condition causes and the daily challenges it creates. Our Vision is ‘A world where no one suffers from Epidermolysis Bullosa (EB)’. Our Mission is to provide lifelong care, while seeking cures, for all those affected/impacted by EB. With support for this appeal, we will be able to accelerate our drug repurposing programme, fund life changing treatments, and continue to provide the EB community support and healthcare”.
DEBRA UK is a registered charity in England and Wales (1084958) and Scotland (SC039654). Company limited by guarantee registered in England and Wales (4118259).