On 21st August 2024, DEBRA Vice-President Graeme Souness CBE and Isla Grist, who lives with recessive dystrophic EB (RDEB), appeared on BBC Breakfast again.

Graeme and Isla met with the family of Barnaby Webber, a teenager tragically killed in the Nottingham stabbings. The family wanted to tell Isla in person that she would be the first person to receive a donation from the Barnaby Webber Foundation, set up to support young people in need.

We'd like to thank the Webber family for acknowledging the strength of Isla, and all the children and adults who live with the pain of EB, and for helping to raise awareness of this cruel condition.