Our President
Graeme Souness CBE
In the honorary role of DEBRA’s President, Graeme Souness 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.
Graeme first got involved with the charity in 2019. At a DEBRA event, he met people affected by the condition, which causes their skin to blister and tear at the slightest touch. He was moved by their bravery and strength and wanted to get involved.
In the years since, as a Vice President, Graeme has helped bring EB to the public’s attention. He has spoken passionately about EB on BBC Breakfast, BBC Radio 5Live and ITV’s Good Morning Britain.
He has also taken on a series of high-profile fundraising challenges. These have included swimming the English Channel there and back. Epic challenges that have raised much-needed awareness and over £5m for DEBRA and the EB community. Vital funding which has enabled DEBRA UK to continue to support the EB community whilst investing in EB research.
“EB isn’t a nasty condition, it’s horrendous, it’s honestly one of the worst conditions. People shouldn’t have to live with this pain. It’s a level of pain and discomfort that is simply unimaginable and it needs to stop. What we are trying to do through DEBRA UK is find a way to bring some pain relief to these children and adults. We are making progress. There are drugs that can make a massive difference to these people’s lives but it’s not coming quick enough. In my new role as President of DEBRA UK, that is my mission, we must secure the treatments that are crucial if we are to stop the pain of EB. I know we can do this. I am up for the challenge!”