On the 20th October, we launched our 'A Life Free of Pain' appeal at The Landmark Hotel in London.

Our 'A Life Free of Pain’ appeal aims to raise £5m by the end of 2023 to develop treatments to #StopThePain for people living with EB.

We were joined today by our DEBRA President, Simon Weston CBE, Vice Presidents, Graeme Souness, Stuart Procter and Lenore England, and DEBRA members, Isla Grist, Lucy Beall Lott and Fazeel Irfan.

DEBRA CEO, Tony Byrne, introduced the event:

Today is a very special pioneering moment for DEBRA, this is a moment where we are looking to change the scale and the target of what we want to achieve. What we want to achieve is a better quality of life for those people suffering with EB.

Tony then introduced a video narrated by Simon Weston, featuring Fazeel and Oliver Thomas (who sadly passed away in December 2021). DEBRA President, Simon Weston CBE was then invited to speak:

As a charity we have never before attempted something as big or as ambitious as this. A Life Free of Pain appeal is about changing the everyday lives of people living with the distressing, debilitating and excruciatingly painful condition that is epidermolysis bullosa.

Vice President, Graeme Souness broke down in tears after having just watched the video he filmed with Isla in the Highlands for the first time. He paused his speech to go into the audience to hug Isla who was sitting on the front row, before returning to the stage to finish his speech:

A life free of pain...something we all take for granted. To witness what I've witnessed, that daily grind for someone with EB, it's hard to imagine anything worse. What we have to do is somehow make their lives more bearable. We musn't rest until we can make their lives more bearable.

A special thank you to Fergus Stewart, everyone at The Landmark London, and everyone who attended on the day.

Find out more about our 'A Life Free of Pain' appeal.

Any donation makes a difference and will get us one step closer to a world where no one has to suffer with the pain of EB.