Eddie Vedder Supports Fight Against Debilitating Skin Condition
JP Cornejo | | Oct 07, 2014 08:00 AM EDT |
Pearl Jam frontman Eddie Vedder has appeared in a video that aims to raise awareness of epidermolysis bullosa (EB), a debilitating skin disease.
The video was produced by EB Research Partnership, where Vedder serves as a board member. The organization seeks to combat the disease, also known as dystrophic epidermolyis bullosa, through gene editing, says NME.
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With the help of the video, the organization hopes to raise US$5 million to fund research into its prevention and treatment, Billboard reports.
"When I first heard about [the disease], it was quite hard to grasp the intensity of the condition," the 49-year-old singer says in the video. "It's about the most insane skin disorder you can imagine. And when you realize it also affects the internal organs, then you see it as diabolical."
Vedder, who is known for his social and political activism, later says: "It's very hard to describe until you meet the young folks with it. And they make you realize how much you take for granted. You also realize these are some of the strongest, coolest, most admirable people on the face of the Earth."
Vedder also says: "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 someday be a reality."
This could happen only if "good doctors and researchers" can obtain more funding through private donations or government effort, he says. "It's something that not only we can do, we just have to," the musician says.
The condition is a group of rare diseases, most types of which are inherited, according to Mayo Clinic, via Music Times. The website also says there is no cure for EB but mild forms can improve with age while advanced cases can be deadly.
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