Our honorary life patrons
At DEBRA, our life patrons play a vital role in championing our mission to improve the lives of people living with Epidermolysis Bullosa (EB).
As lifelong ambassadors, they use their influence, experience, and networks to raise awareness, inspire support, and help drive meaningful change. Their enduring commitment reflects the values at the heart of our charity and our vision of a future free from the pain of EB.
Simon Weston CBE
Simon Weston CBE, the inspirational former soldier and charity campaigner, served as DEBRA UK President for over nine years. He will now extend his relationship as an Honorary Life Patron of the charity.
In his time as President, Simon dedicated himself to raise awareness of EB and DEBRA as well as supporting fundraising to provide care and support for the EB Community and fund research into effective treatments and a cure.
Whilst serving as a Welsh Guardsman during the Falklands conflict, Simon suffered 46% burns to his body when he was injured in an explosion aboard HMS Sir Galahad. Since his injury 36 years ago, Simon has continuous treatment to manage his condition and has undergone 98 operations. On his connection to DEBRA and the EB community, Simon says:
“It has been an absolute honour to lead DEBRA UK as their President. I don’t have EB, but I have always felt very relevant to the EB community. I have spent so much time over the years having dressings changed and having healing skin pulled off. Having itch beyond all comprehension. I can somewhat relate to their pain and suffering of EB.
I am so grateful that I have been able to use my platform to help raise awareness and support for people with EB. It has been a privilege to part of this great charity and the vital work that they do. Real progress has been made. The journey to securing potentially life-changing EB drug treatments has begun.”
Philip Evans
Philip Evans joined DEBRA following his daughter Francesca’s EB diagnosis in 1978. Francesca sadly died in 1985 aged six. He was one of the key individuals at the outset who transformed DEBRA from a small charity to the large national medical research charity and patient support organisation that it is today.
His tireless work for DEBRA, alongside his career working in the financial sector in the City of London, brought him to the role of Chairman of the Trustees for DEBRA from 1988 – 2011. Following his retirement Philip was made a Life Patron in 2012.
Alongside his busy schedule as DEBRA trustee, Philip served 34 years from 1977 – 2011 for the Queen Elizabeth’s Foundation, which was founded by his Father, developing innovative services to support almost 10,000 disabled people a year to increase their independence and achieve their goals in life. Throughout his time at the Foundation, he worked in various roles, including Treasurer, Chairman of Management Committee and Vice Chairman of trustee board.
In 2000, with the support of Eddie George who was then Governor of the Bank of England, Philip conceived and promoted Heart of the City, a charity working with companies across London. Heart of the City encouraged these businesses to ‘do business responsibly’ in order to have a genuinely positive impact on their community, workforce and environment.
From 2003 until 2007 Philip was a trustee of Ronald McDonald House Charities, which provides families a warm and comfortable place to rest, eat and relax, should their child be staying in a hospital ward away from home.