Graeme Souness CBE, the footballing legend turned passionate advocate, stunned the nation in June 2023 when he swam the English Channel to raise money and awareness for epidermolysis bullosa (EB)—a debilitating genetic condition known as butterfly skin due to the extreme sensitivity it causes.
The incredible achievement sparked national admiration and raised over £1.5 million for DEBRA UK, the leading charity supporting people with EB. Not one to rest on his laurels, Graeme is now preparing for a second, more ambitious swim to drive continued progress.
This time, the former Scotland captain and his relay team of six will attempt to complete a return Channel swim—travelling to France and then back to England—in a bid to continue funding the search for effective EB treatments.
Graeme shared the emotional reason behind his efforts:
“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 swim is set to take place in early May, depending on sea conditions, and the goal is to raise £750,000—enough to fund two further clinical trials. These trials will test existing, licenced medications already used to treat severe skin conditions like eczema and psoriasis, which could significantly ease the painful blisters and sores caused by EB.
To find out more about EB, visit www.debra.org.uk, and to support Graeme’s challenge, visit www.give.as/debra.
