Imagine having skin so fragile that the slightest touch could cause painful blisters. Imagine still, the only treatment available is expensive and painful. This is the reality for thousands of children who suffer from a genetic skin disease called Epidermolysis Bullosa, or EB.

For 2-year-old Ermias Blank and his family, living with EB means that a simple task, such as bath time, becomes a painful ritual that is spent popping puss-filled blisters and re-bandaging open sores. Because every tear in the skin makes Ermias vulnerable to infection, his family fears for his health and his future. Not only is Ermias at risk of major trauma to his skin, the disease also degrades internal organs, which means that many people with EB won’t live to adulthood.

“We live with not knowing what the end looks like,” says Ermias’ mom Lacey Yantis. “It’s a lifetime of special education, of crushed dreams; it means waves of emotional exhaustion that are almost as debilitating as the disorder itself.”

While there is currently no cure for EB – there is hope.

Jakub Tolar, M.D., Ph.D., is working to develop a genomic mapping technique to identify EB before birth and fix a person’s genes if they are at risk for developing the disease. If successful, his research could potentially be applied to cure more than 5,400 other rare genetic disorders – helping upwards of 30 million Americans – most of them children.

Pearl Jam frontman Eddie Vedder played a concert at Microsoft Production Studios, Thursday, to give Tolar’s research a financial boost. Ninety Microsoft employees secured their tickets through an online auction as part of the company’s annual Employee Giving Campaign. Concert proceeds benefitted the EB Research Partnership, a not-for-profit organization co-founded by Eddie and his wife Jill Vedder, along with Heather and Ryan Fullmer and Jamie and Alex Silver, who both have sons with EB.

“It was unbelievable, indescribable. Microsoft plus Eddie Vedder and the cause, a once-in-a-lifetime experience,” says John Russell, a customer success manager, who counts working for Microsoft the “pinnacle” of his career, and seeing Vedder in such an intimate setting, tops on his bucket list.

“Incredible. Best show I’ve ever been to,” adds Tom Moran, a principal program manager lead for Microsoft’s Customer and Partner Experience group. “It’s amazing how well he connects with his audience, whether it’s 90 or 90,000.” As the biggest donors of the evening, Moran and his wife, Val Cole, who met while working at Microsoft, were invited onstage as Vedder sang, “Just Breathe,” the couple’s wedding song.

Two-year-old Ermias – likely the youngest fan of Pearl Jam – joined everyone in the audience.

“It’s very hard to describe until you meet the young folks with EB, and they make you realize how much you take for granted,” Vedder says in a video about EB produced by Microsoft Production Studios and World Famous. “You also realize that these are some of the strongest, coolest, most admirable people on the face of the Earth. EB is something that we not only can do something about, we just have to.”

Silver, chairman of the EB Research Partnership, says he’s thankful for the efforts of Microsoft employees, and forever grateful for the commitment that Eddie and Jill Vedder have made to curing EB.

“There’s nothing worse than the feeling that you can’t help your child. You never think your child is going to be the one who suffers from a rare disease like EB,” says Silver. “But when you combine the financial support of Microsoft’s employees with the musical talent of Eddie Vedder, and the technical skill of Dr. Tolar, you can heal this awful disease to make sure no other child has to suffer the way that thousands do now.”