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Our President and Vice Presidents

Our President and Vice Presidents

In the honorary role of DEBRA's President, Simon Weston CBE, will 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, including surgery to create new eyelids earlier this year.

Simon Weston says, “I feel very relevant to DEBRA, having spent so much time having dressings changed, having healing skin pulled off because that’s what dressings do, having itch beyond all comprehension. I understand something of the pain and suffering that people with EB endure every day. I want to do what I can to fight EB and raise the profile of the condition. I hope by doing this we can increase understanding of the condition with the general public and improve the quality of life for people suffering from the condition here and now.”

Simon’s own experience of the long-term use of opiates like morphine to manage pain means he has a unique insight into the side effects can cause and welcomes research into more effective forms of pain relief, including the research we’re funding into the use of cannabinoid-based medicines to treat pain and itch in EB.

Read more about the trial here.

Vice President - Graeme Souness


"I am delighted to be Vice President of the charity DEBRA, the charity that supports people with Epidermolysis Bullosa (EB). I am taking on the role because I am in a position to bring this charity to the attention of a number of people who will be able to make a real difference to the EB community.

I personally was appalled at just how cruel and painful the condition is. More people need to know about this condition because it is the worst thing that I have ever seen. If I can generate the sort of passion that I feel for this cause from a few people that I know then we could make a huge impact on the research into EB – research that not only will help those living with this now but could even lead to a cure"

Vice President - Frank Warren

"I’ve hosted the annual DEBRA Fight Night for the past 14 years to support the charity’s fundraising. I got involved with DEBRA after meeting a wonderful young man called Jonny Kennedy, who had EB. I wanted to commemorate his life and raise funds to help sufferers of this terrible skin condition."

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