Your next chance to plunge into Puget Sound from Alki Beach for a cause is one week from tomorrow – and this one is taking on disorders collectively known as EB, under the leadership of a West Seattle couple you might know. We received this announcement with the explanation that they’ve done this at their home in previous years but this year “want to get as many West Seattleites to join them as possible!”
Longtime West Seattleites Eddie & Jill Vedder co-founded EB Research Partnership (EBRP) in 2010 along with a dedicated group of parents set out to save their children’s lives. Their community will be rallying around Team Vedder by plunging into the cold waters of Puget Sound off Alki Beach on Sunday, April 21st at 10 am as part of a national campaign to raise money to treat and cure Epidermolysis Bullosa (EB), a family of painful and life-threatening rare genetic disorders that affect the body’s largest organ: the skin.
The Vedders serve as global fundraisers and ambassadors sharing the mission of curing and treating EB with the world. EBRP is now the largest global nonprofit funding research to discover treatments and cures for EB, and Jill serves as the Board’s chairperson. The organization has raised more than $60 million, funded 140 research projects, increased clinical trials from 2 to now more than 40, and helped lead to the first two ever FDA-approved treatments for EB last year.
The Plunge for Elodie is named after 7-year-old Elodie Kubik, who lives with a severe form of EB. The event began in 2018 in Wellesley, Massachusetts, organized by friends of Elodie’s mother, and has now grown into an annual global fundraising and awareness-raising initiative.
This year, Team Vedder will be plunging Alki Beach with a local EB patient, Patterson, a young boy who, like Elodie, suffers from a severe form of EB. Patterson endures daily bandage changes that can be grueling and take time away from other activities. EB is challenging, as it affects so much more than just his skin. It is a constant battle, both physically and emotionally, as he navigates through pain, itch, inflammation, and wound care. But amidst the challenges, there is a powerful force that emerges – strength and resilience.
“We are inspired by the courage that those with EB, like Patterson and Elodie, show every single day to fight alongside them. 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,” said EBRP Chairwoman Jill Vedder.
4 Ways to Support Team Vedder’s #PlungeForElodie This Year
1. Donate to Team Vedder: Hit the “Donate” Button to give. Every dollar raised through the Plunge supports EBRP’s mission to treat and cure EB.
2. Fundraise in Your Community: If you want to go bigger and make your own fundraising page under The Vedder Team, click “Join Team” and follow the prompts to create an account. (All ofyour efforts will be tallied up on the “Team Vedder” page.)* We have good prizes for top fundraisers!
3. Join Vedders & Friends in person at Alki Beach near the bathhouse at 10 am on Sunday, April 21 to take the plunge with us by making a minimum donation of $25 here *AND* completing this waiver online prior to the event.
4. If you can’t join us in-person, film yourself taking a virtual plunge in a cold-body-of-water, mound of snow, or tub filled with ice and tag @ebresearch and @jill.vedder #PlungeForElodie on April 21st so we can see your amazing plunge!
Alki Event Participants – Know Before You Go
-Bring a copy of your signed waiver and registration form, both of which need to be submitted ahead of time online.
-Arrive ready to Plunge with your plunge clothes beneath the clothes you wear to the event.
-Don’t forget to bring warm clothes and towels for after you plunge, comfy shoes that are easy to slip in and out of, and something to put your wet clothes in after!
-There will be no lifeguards on duty.
-Swim caps will be provided, first come-first serve.
More About EBRP
Combining its award-winning Venture Philanthropy business model and world-renown Scientific Advisory Board, EBRP is creating a blueprint for how rare diseases can be cured. Donating to EBRP not only supports families fighting EB everywhere, but also has the potential to impact thousands of other rare diseases.
Thanks to the long-standing support of brave EB Warriors, resilient EB families, brilliant medical experts and generous donors, EBRP has been able to raise over $60M for critical EB research, fund 140+ innovative projects, and accelerator the first two FDA approved treatments for EB and transform the clinical trial landscape by 20x since 2010.
The Alki Beach Bathhouse is at 60th SW/Alki SW.
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