"Epidermolysis Bullosa is a rare, life-threatening genetic skin disorder that mostly affects children. The condition causes fragile, blistering skin, and those who have it are sometimes called "butterfly children" as their skin is considered as fragile and easy-to-break as a butterfly's wing. People born with EB lack critical proteins that bind the skin's two layers together. Without these proteins, the skin tears apart easily, leading to severe pain, disfigurement, and internal and external wounds."
"Vedder and his wife Jill became aware of the condition when a close friend of their family had a child born with it. In 2010, the couple co-founded the EB Research Partnership with a group of affected families. The charity has since become the largest organization funding research into EB, and they've set a goal of finding a cure for the disorder for 2030."
Matter of Time arrives on Netflix and centers on Eddie Vedder's October 2023 solo concerts in Seattle, staged to raise money for clinical research into Epidermolysis Bullosa (EB). EB is a rare, life-threatening genetic skin disorder that mostly affects children and causes fragile, blistering skin; affected children are sometimes called "butterfly children." People born with EB lack proteins that bind the skin's layers, causing the skin to tear, resulting in severe pain, disfigurement, and internal and external wounds. An estimated 500,000 people worldwide have EB, and the most severe forms can shorten life expectancy to infancy or up to about 30 years. Vedder and his wife Jill co-founded the EB Research Partnership in 2010; the charity has grown into the largest funder of EB research and aims to find a cure by 2030. Matter of Time combines concert footage with real-life stories of patients, families, and researchers, and includes a score by an indie rock band.
Read at The Independent
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