Eddie Vedder and the Chicago Cubs Team Up to Raise $50,000 to Help Kids with EB
The seventh game of the World Series was memorable for many reasons: It was the bitter end of the historic match-up between the long-suffering Cleveland Indians and the Chicago Cubs. There were extra innings and a rain delay. Bullpens were exhausted. And Illinois native and Pearl Jam singer Eddie Vedder — who had led fans in a seventh-inning-stretch singalong dedicated to Cubs catcher David Ross during the previous game — was among the celebrants after the Cubs’s victory.
But it’s what Vedder did in the aftermath of the game that may be even more meaningful. The next day he got on a plane and flew to New York to attend that night’s ACTion for Jackson, the seventh annual benefit of the EB Research Partnership, of which he is a founding board member.
EB — or Epidermolysis Bullosa — is a rare disease that affects approximately 30,000 Americans. A patient living with EB lacks a critical protein that binds the layers of skin—on internal organs as well as externally — together, without which the skin tears apart, blisters, and sheers off, leading to severe pain, disfigurement, wounds that never heal, and, in too many cases, an early death from an aggressive form of skin cancer.
The good news is that a medical breakthrough for EB could be applied to many other diseases. Researches have described EB as the “tip of the spear” to prove that gene editing can cure diseases. There are 5,400 incurable genetic conditions that impact 10 percent of the population, or 32 million people.
Gene editing, which has been proven to help in EB, can also help the vast majority of rare disease sufferers.
Vedder has a unique connection to EB: His wife, Jill, was childhood friends with Ryan Fullmer, whose son, Michael, was born with it. Vedder, Jill, Ryan, Fullmer, and his wife, Heather Fullmer, founded Heal EB. Two years ago, they merged with the Jackson Gabriel Research Foundation — which was founded by my college friends Alex Silver and Jamie Grossmann Silver, whose son, Jackson, is afflicted with the disease — to create the EB Research Partnership, on whose board I sit. To date, we have raised $12 million to fund research to find a cure, but we need to raise $25 million over the next three years in order to fully find our pipeline of projects.
That night, during a live auction in front of a sold-out crowd at the New York Public Library, Vedder ascended to the podium to present a last-minute item that was not listed on the program: a Chicago Cubs package for four that included a tour of Wrigley Field, on-field pre-game passes, tickets for Cubs president Theo Epstein’s suite, and a meet-and-greet with Epstein and baseball operations staff.
Still reeling from the Cubs victory, a visibly emotional Vedder spoke about what it meant to wait 108 years (the last time the Cubs won the World Series) for something he really wanted to happen, and how the wait made all of those long, winless years worth it.
He analogized it to the race to find a cure for EB, and how, when it happens, the result will feel similarly sweet.
Bidding for the package quickly rose to $30,000, at which point Vedder threw in a Wrigleyville bar crawl — beers on him! — and it rose by $5,000 increments until it topped out at $50,000.
Not content to stop there, someone offered to buy the bottle of beer Vedder was drinking. It went for $1,000 — contributing to a total of $1.1 million raised that night.
To learn more about and/or donate to the EB Research Partnership, visit ebresearch.org.
Read more about EB on Medium:
When our son was born with an incurable genetic skin disorder, we cofounded a nonprofit with Eddie Vedder to lead the…medium.com
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Jackson Gabriel Silver Foundationmedium.com