Fundraiser for genetic disorder EB held at Phoenecia restaurant
Well known West Seattle philanthropist Jill Vedder is a passionate supporter for research into a relatively rare genetic disorder, Epidermolysis Bullosa or EB. She brought that passion and her two daughters to a fundraising event that was held Sunday April 2 at the Phoenecia Restaurant in the Junction.
The event had participants take ice bath plunges (up to 3 minutes long) just outside the restaurant.
EB patient Patterson from Seattle was in attendance too, even bravely taking the plunge himself. It's easy to see why meeting people like Patterson generates so much compassion.
EB is life threatening and affects about 500,000 people globally. People with EB are lacking a protein in their skin that binds their skin together affecting them externally as well as internally. Their skin is extremely fragile and easily damaged. They must go through excruciating bandage changes every day.
Both Jill and Eddie Vedder (Pearl Jam), long time West Seattle residents got involved with the cause after Jill's childhood friend had a son who was born with EB. Jill said, "My oldest childhood friend, Ryan Fulmer, had a son, Mikey, born with EB. We got together to see what we could do. We started Heal EB, and then joined with another family and started the EB Research partnership (EBRP)."
EBRP is the largest global nonprofit funding research to discover treatments and cures for Epidermolysis Bullosa (EB), Founded in 2010 by a group of dedicated parents and Jill and Eddie Vedder, EBRP has raised $40 million and funded 120 EB research projects to date, impacting the clinical landscape with a 20x increase in the number of clinical trials in EB.
They came to participate in a fundraising effort in the form of a plunge into cold water called the Plunge for Elodie that has been held annually since 2018 and is now an international effort. It has surpassed $2 million raised for critical research.
Named after 6-year-old Elodie Kubik, who lives with a severe form of EB, the plunge began as a local effort in Wellesley, Massachusetts, organized by childhood friends of Elodie’s mom. They wanted to do more for the family than just offer emotional support, as they learned about EB and the larger rare disease community,
"A decade ago, when we started this, there were only two clinical trials and little hope for families. We now have over 40 clinical trials. We had our first approved treatment. And this year, we're looking at four different ones that are awaiting FDA approval. We have the research everywhere but Minnesota, Denver. Columbia and Stanford which has the Center for Curative and Definitive Medicine, and Doctors Jean Tang and Tony Oro. They truly believe that by the end of this decade, we could cure EB, and curing EB could potentially cure 7000 other rare genetic disorders. EB is just a one gene mutation, just one gene. So if you can fix that one, they believe that you can fix all of them. "
The primary tool, beyond the use of high tech bandages is a gene editing technique called CRSPR. Recent developments and improvements in the genome editing field have paved the way for the translation of various gene repair strategies.
That's more than hope. It's an impending reality for current patients and more. Two hundred children born today will not live to see their fifth birthday. So this could save lives even for the as yet unborn.
Jill shared a story from a Pearl Jam concert and an EB patient.
"It's funny because it's positive and also was terrifying for me in the moment. But, Mikey, my friend's son... came to one of my husband's concerts in California. And we had Mikey on stage and he was having the time of his life and he was jumping around and I was like, 'Oh my God, this kid is going to stage dive.' That would be the worst thing that could ever happen, and I was sick to my stomach like, I mean, if he bumps into something, he tears his skin.
And all of a sudden, I think Ed gave him a tambourine. The next thing. I know he's smashing this tambourine on. His head. I'm like, 'this is just gonna go terribly wrong. This is awful.' But he was having the best time of his life and then I think it was within a week later, there was a gentleman in the crowd named Doctor Jeffrey Heddles. And he reached out and said 'I was so inspired by seeing Mikey on stage', and he gave us half a million dollars."
Jill said the best way for people to get involved and see what's going on is through their social channels and website https://www.ebresearch.org
She noted that, "We've been given the highest charity ratings...every dollar that we do raise does go to research and we have a pretty small staff, but we've got a family that underwrites all of our office fees."
She is both hopeful about the research and realistic about the realties of the condition.
"There's so many rare diseases, so I'm not I'm not really sure about how that will all go down. I know that EB presents itself as one of the worst things you could ever see. They're literally in severe pain all day, you know, even bandage changes. They have to take bleach baths to get the the bandages off their skin, which has been infused because they've got open wounds all over their body. We're super fortunate that we've been able to help because my husband and the spotlight and the microphone that he has had, we've been able to bring so much attention to it. It has gotten the attention of scientists. So they're really focused on this one and they're the ones that tell us if you fix this one, you can fix all of them. So that's the goal. "
Team Phoenecia raised $7000 and Team Vedder has collectively raised $50,000.