Pearl Jam frontman Eddie Vedder has appeared in a video appeal to raise money to cure a debilitating skin condition – click above to watch.
Vedder is a long-time supporter of the EB Research Partnership, which is looking to eradicate the condition epidermolysis bullosa by gene editing. It aims to raise $5m (£3.1m) to fund research.
Also known as dystrophic epidermolysis bullosa, the condition was thrown into the spotlight in the UK by the 2004 documentary The Boy Whose Skin Fell Off, which told the story of the late Jonny Kennedy.
Speaking in the video, Vedder says: “When I first heard about [EB], it was quite hard to grasp the intensity of the condition. It’s about the most insane skin disorder you can imagine. And when you realise it also affects the internal organs, then you see it as diabolical.”
Later, he says: “It’s very hard to describe until you meet the young folks with it. And they make you realise how much you take for granted. You also realise these are some of the strongest, coolest, most admirable people on the face of the earth.”
Vedder has previously said of the condition: “Not many people are currently aware of it, though it affects one in every 50,000 children. Because of major advances in stem cell research, the non-controversial kind, it appears that a cure could some day be a reality. But only if the good doctors and researchers can acquire further funding, whether privately or through our government.”