Eddie Vedder has championed several causes throughout his career, with one of the biggest being supporting research for treatments for the rare genetic disease Epidermolysis Bullosa.
Epidermolysis Bullosa is an incurable disease that effects the skin and causes painful blisters and sores. It is most commonly seen in young children and is caused by a genetic defect where proteins that bind skin together are missing in carriers.
Vedder has been a champion of EB research for more than a decade and has held several fundraising events (including a pair of local shows last year) to raise awareness of the disease and money to research treatments and find a cure. In 2010 he and his wife Jill founded the EB Research Partnership which to date has raised more than $60 million to support EB research efforts. That money has contributed to 140 research projects, increased the number of clinical trials by more than 35 and helped lead to the first ever FDA-approved EB treatments.
On Sunday, April 21, both Vedders will be participating in the Plunge for Eloide at Alki Beach. The event is named after a young EB patient who suffers from a severe form of EB. The Plunge for Eloide began in 2018 and has become an annual fundraiser globally. As part of this year’s event the Vedders and others will be taking a plunge into the cold waters of the Puget Sound.
“Our mission is to cure EB by 2030 and events like the Plunge help us raise the awareness and dollars to achieve it. We have made tremendous progress towards our goal of delivering treatments and a cure, however we will not stop until there is a cure for every patient and our model can lead the way for all those battling rare diseases,” Jill, who is chairwoman of EBRP, said in a press release announcing the event.
The Plunge for Eloide is open to the public and anyone who makes a minimum donation of $25 is eligible to participate in the plunge after signing a waiver online. If you would like to contribute to the cause without getting wet you can donate directly to the Team Vedder effort.
If you are planning to participate in the event, which begins at 10 a.m., you will need to bring a copy of your signed waiver and registration form. It is recommended that you also bring warm clothes to change into and towels to use to dry off with after the plunge, and to also bring a bag to store your wet clothes in.
