Our second chosen charity, that will receive an equal split of sponsorship proceeds, is DEBRA UK.
DEBRA is the national charity that funds research and specialist healthcare to support individuals and families affected by Epidermolysis Bullosa (EB) – a painful genetic skin blistering condition which, in the worst cases, can be fatal. This year we've all experienced a lack of physical contact, but for many with EB, they are too fragile for a hug at the best of times.
DEBRA was founded in 1978 by Phyllis Hilton whose daughter Debra had EB – the charity was the world’s first EB patient support group.
Phyllis wrote to magazines, radio stations, celebrities and hospitals to organise the first meeting for parents of children with EB. 78 people attended the meeting which was held in Manchester – a meeting which led to DEBRA being formed. Sadly on 21 November 1978, the year the charity was founded, Debra passed away.
DEBRA is now international in scope with sister organisations in 40 countries, a worldwide research programme and strong clinical and nursing services. Thanks to funding for care and research, all UK patients have access to state of the art dressings, diagnosis of the specific genetic type of EB is routine and medical research trials are happening across the world.
A New CEO with a Passion to Help
“When we called our members to check up on them, 26 per cent of them needed help and the rest were happy to hear from someone that cared how they were doing."
– Tony Byrne
CEO, DEBRA UK
Tony Byrne (pictured right) is the new CEO at DEBRA UK as of 12 October 2020. Alongside this he maintains Non–Executive positions with several organisations such as Brighter Futures for Children Ltd and Orian Solutions Ltd.
Tony brings over 30 years’ experience in senior management roles working in the commercial, charity and not for profit sectors globally. He was a director in several positions at Interserve for 5 years delivering TFM and Security for contracts such as HSBC and the BBC among others.
As Board Director for UK and Ireland at Compass Group PLC he devised and launched the Group’s UK & Ireland education strategy, branding and services Tony was appointed by the Secretary of State for Education to serve on the School Food Trust providing strategic advice and guidance on delivering school meals.
Speaking to Tony about his new engagement for DEBRA UK, he explained how his Facilities Management skills transfer. “Corporate knowledge allows you to deliver the best customer service at best value and thereby maximising profits for shareholders,” he said. “Applying that to charity work means you maximise the support potential directly for those in need.
A Patient's Viewpoint on the Efforts of Charity
“It also means you have the expertise for business negotiations and legal issues” Tony mentioned, highlighting the benefits that both worlds of practice can bring. The buzz that comes from helping people lead better and happier lives however, is completely unique.
For those that are fortunately without persistent medical conditions, it may sometimes be unclear how many support mechanisms that charities like DEBRA undertake. Understanding the role of a charity from a patient perspective shines new light on the way in which these functions aid a community that are suffering with similar symptoms. Just as the NHS direct people to DEBRA for those diagnosed with EB, Tony was directed to the Chrohn’s & Colitis UK charity after a personal diagnosis. The diversity of care was apparent to him through the reinforcing of social connections, providing of professional guidance, and researching to improve treatment with hope of developing a cure. This is exactly the focus of DEBRA also – for those with a very different ailment the needs of support service are very much on the same lines.
Fundraising and Care Giving in 2020
25 to 31 of October this year was #EBAwarenessWeek but 2020 has been a very difficult time for fundraising, as we discussed with Anthony from Boxing Futures, our other charity beneficiary for The Black Tie Charity Boxing Dinner. Many of DEBRA’s supporters have continued to donate during these trying times, providing a lifeline for the healthcare and community support teams that kept working through the pandemic.
Tony highlighted that DEBRA UK is a “member-led” organisation, and the staff act as a networking agent for many issues that people with EB face. When notified of a specific problem with blistering in and around the eyes, Tony and his team were able to reach out to other DEBRA divisions and their members around the world in order to collaborate on independent experiences and remedies. Not only does it quickly help the patient, but DEBRA also operate as a bridge for clinical appointments if necessary, and use the information gathered to direct scientific study.
“Over one hundred DEBRA UK shops were closed in the first lockdown alone,” said Tony. “However, we retained our research grants, which is really important” – allowing the ongoing pursuit of better treatments, potential cure and understanding of the condition to continue with minimal hindrance.
Being able to offer telephone support has been vital over this year, with the isolating nature of the disease enhanced by the restrictions of this pandemic. “When we called our members to check up on them, 26 per cent of them needed help and the rest were happy to hear from someone that cared how they were doing,” Tony expressed. “Cure and care” are the two goalposts for their work, and he’s “proud to have kept up a level of both pursuits despite the difficulties” unique to this year. As the only charity on the front-line providing for the EB Community, they are still helping members to get access to food deliveries, assisting with other financial issues, securing dressing supplies and supporting wellbeing as coronavirus regulations continue.
Mason and Les
At 12 years of age, Mason is faced with daily pain and a very uncertain future – he champions where boxing has inspired his strength but also where his own completely original strength inspires others. Tony is "in awe of his courage” as am I and it’s clear to see why. The video above showcases Mason’s unparalleled determination and spirit. His story helped bring awareness of this condition to the masses with the #FightEB hashtag in 2019. In 2020, he helped promote the cause with a challenge the boxing community. Mason and his mum Kerry asked athletes to do the splits in an interview with Dev Sahni from Frank Warren's Queensberry Promotions, the promoters of our Black Tie Boxing Charity Dinner. He started this in the hopes of raising money for the EB nurses at Great Ormond Street Hospital that are part-funded by DEBRA UK.
The links between boxing and EB are not entirely obvious, given the difficulty for someone like Mason to actually engage with the sport – however it is that struggle against adversity which he sees in boxers of the ring. Not giving up in the fight when their bodies are hit with different blows, those that they both do and do not see coming. Getting back up to overcome the challenges for what they love.
That’s exactly the sentiment of Les Paine, who grew up in the 1960s when there was little knowledge of EB to be shared, and consequently had limited help. He unfortunately had to stop working in his 30s, but has persevered in life and holds a liberating hobby in high regard.
“I started riding a motorbike in 1981 and passed my test by age 19," wrote Les. "It’s the one big love in my life and takes me to a place where I forget about EB for a few hours. When I speed off on the bike it’s like I leave EB in the gutter. It just becomes dust. I do need to double up the foam dressings to protect my EB skin against the motorcycle clothing or as I term it my body armour, so it doesn't peel and blister skin. And after I have a day on my bike I need several to help my skin recover. But it is still worth it.”
“Life with EB is an unimaginable roller coaster and it has had a profound and devastating impact on my life. But I will not let EB beat me.”
Les was introduced to DEBRA in 1996 after he had been referred to the St Thomas' Hospital specialist EB unit. “The support DEBRA has given me has changed my life,” he said. “I am now in regular contact with other people who have EB and I receive so much information and support to help with my everyday life.”
As mentioned our event is hosted in association with renowned Queensberry Promotions, which represents world-class fighters such as Tyson Fury (WBC, Ring & Lineal Heavyweight World Champion) and Daniel Dubois (British, Commonwealth, WBC Silver Heavyweight Champion).