Last Updated on: 2nd April 2025, 06:53 am
In summer 2023, football great Graeme Souness CBE took on the English Channel, swimming to France in support of those living with epidermolysis bullosa (EB)—a rare and painful genetic skin condition, often called butterfly skin due to the fragility it causes.
That inspiring swim raised over £1.5 million for DEBRA UK, the charity leading the fight against EB. Now, Graeme is ready to take things up a notch by returning to the Channel for a tougher, longer challenge.
In May, Graeme and a six-person relay team plan to swim to France and back again—a round trip designed to shine an even brighter spotlight on EB and raise funds to find much-needed treatments.
Reflecting on what motivates him, Graeme said:
“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 team is expected to begin their swim in early May, depending on conditions, with a fundraising target of £750,000. The proceeds will enable DEBRA to fund two additional clinical trials aimed at testing already-approved treatments for other inflammatory skin conditions—potentially bringing real relief to people suffering from EB’s harrowing symptoms.
To learn more about EB, head to www.debra.org.uk, and to donate, please visit www.give.as/debra.
