Graeme Souness CBE, the former footballer turned passionate fundraiser, is once again preparing to dive into the English Channel—but this time, it’s twice the distance. His mission: to raise awareness and support for those suffering from epidermolysis bullosa (EB), a rare and excruciating skin condition known as butterfly skin.
In 2023, Graeme’s Channel swim inspired thousands and helped DEBRA UK raise an incredible £1.5 million. The funds have already been used to kick-start drug trials that could offer hope to people living with EB. Now, Graeme is taking on a new challenge—swimming to France and back—in a bid to help even more people living with the condition.
Together with a relay team of six, Graeme will enter the waters again in early May to highlight the urgent need for further research and funding.
Reflecting on the journey, Graeme shared:
“I was truly blown away by the support we got back in 2023. I had to do something for my wee friend, Isla, and the thousands of other children and adults affected by this cruel condition. With the money raised DEBRA was able to start testing drugs which could be life-changing for people with EB, but there are many more drugs that they need to test if we are to secure effective treatments for every form of EB, treatments that could help stop the extreme pain of EB. This is why we’re getting back in the water once again. It’s going to be tough; I’m 72 now and it’s double the distance, but I know we can do this, we must do this, we must BE the difference for EB.”
The goal this time is to raise £750,000—enough to support two new clinical trials of existing licenced drugs already used to treat other inflammatory skin conditions. These medications may also provide relief from EB’s most severe symptoms, including extreme pain and chronic skin damage.
Find out more at www.debra.org.uk and support Graeme’s mission by donating via www.give.as/debra.
