Tom Moran and his wife Val Cole love Pearl Jam so much that when the Bellevue couple got married a couple years ago the bride walked down the aisle to the band’s hit “Just Breathe.”
So when the opportunity arose to bid on a once-in-a-lifetime opportunity to see Pearl Jam’s front man Eddie Vedder at an intimate solo show in Bellevue late last month and sit on stage with him for a song. They hit the auction hard, bidding and bidding hoping for the chance to have Eddie play “their song” to them. When they found out where the money was going they raised their bid even higher.
A few months ago Eddie and his wife Jill became founder members of the largest nonprofit dedicated to finding a cure for Epidermolysis Bullosa (EB), a devastating, life-threatening genetic skin disorder, which causes children to break out in skin blisters and erosions all over their bodies.
“My wife Jill and I are thrilled to be able to support the brilliant work of leading doctors and researchers committed to identifying better treatments, and ultimately a cure for this cruel disease,” Eddie said. “Our close family friends have a young son with EB and we want to do everything we can to ensure a better quality of life for him and all children living with these types of genetic disorders.”
Both Tom and his wife have lost loved ones to genetic disorders and some of their friends are currently suffering from EB. It was a no brainer to donate as much as they could, he said.
In October, the newly merged group, EB Research Partnership, a joint collaboration between the Vedders, the Jackson Gabriel Silver Foundation and Heal EB, joined forces with Microsoft’s Employee Giving Campaign in an effort to raise $5 million for research.
As part of the fundraising effort, Vedder played a solo show at Microsoft Production Studios in front of 90 donors, including Tom and Val, who also won the chance to sit on stage with Eddie drinking wine while he serenaded them with “Just Breathe.”
All of the money raised by the concert was donated to help fund research by Dr. Jakub Tolar, at the University of Minnesota, who is currently working to advance gene and cellular engineering research.
“EB is a horrible genetic disorder, where kids suffering from it are referred to as ‘butterfly children’ because their so fragile,” Tom told the Reporter. “These kids just want to be kids, and don’t understand why they can’t play, why they may feel like their body is on fire, why they’re constantly in pain.”
The good news, Tom said, is that cures are within reach, but it requires funding to research and provide treatment.
EB Research Partnership Chairman Alex Silver said the money raised at the concert will go a long way to help further those cures but much more is needed.
“As families impacted by rare diseases know all too well, it is difficult to access sufficient research dollars to make a true impact on the development of new treatments and cures,” Silver said.
Dr. Tolar’s research is currently using genomic mapping techniques to essentially fix a child’s DNA before birth. If successful the technique could be used to cure more than 5,000 other rare diseases currently affecting 10 percent of the U.S. population.
For more information about EB or to donate visit www.ebresearch.org.