‘Plunge for Elodie’ surpasses goal, raises over $500K for EB research

Celebrities, supporters turn out worldwide for 7th annual fundraiser

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by Mary Chapman |

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From where it all began in Wellesley, Massachusetts, to the frigid waters of Adelaide, Australia, celebrities and other supporters globally joined in the 7th annual Plunge for Elodie, from March 10 to April 27, raising some $530,000 for epidermolysis bullosa (EB) research.

This year’s proceeds — the goal was $500,000 — brings to $2.5 million the amount raised since 2018 for the EB Research Partnership (EBRP). The organization is the largest global nonprofit aiming to fund studies to treat and cure EB, a group of rare skin disorders estimated to affect about 500,000 people globally.

Supporters, EB families, ambassadors, and EB advocates took part in this year’s #PlungeforElodie campaign, which also sought to raise EB awareness, by plunging into freezing waters at more than 20 locations around the world.

The Plunge for Elodie campaign started in Wellesley as a modest, local fundraiser named for Elodie Kubik, a girl born in 2016 with a severe form of EB. It was established by longtime friends of Elodie’s mother, Emily Kubik, and has since become a global movement.

“I’m … so grateful for every single person who has joined us in this fight. Your donations, shares, fundraising efforts and plunges are truly making an impact and we will not stop until there is a cure for EB,” Emily Kubik, Elodie’s mom and EBRP board member, said an organization press release.

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Fundraiser for EB research now held in over 20 locations globally

In addition to Wellesley, official plunge sites in the U.S. included Cleveland; Greensboro, North Carolina; Nashville, Tennessee; and Greenwich, Connecticut. A plunge was held at Dickinson College, in Carlisle, Pennsylvania.

Other U.S. locations included San Francisco, Los Angeles, and New York City, as well as Sheridan, Wyoming, and Beacon and Utica, both in New York. In Canada, a plunge was held in Toronto.

In Australia, events were held in Melbourne and Sydney, as well as the Adelaide location. In the U.K., a plunge was held in North Devon and in the Channel Islands, with an event also held in Okinawa, Japan. A Virtual Plunge campaign ran from March 3 to April 7.

EBRP co-founders Jill and Eddie Vedder hosted a Seattle plunge alongside a young EB patient named Patterson, joining hundreds of local supporters in a jump into the chilly waters of Alki Beach in Washington. Vedder is a member of the rock band Pearl Jam.

Elsewhere, TikTok celebrities Luke and Sassy Scott also participated in the Plunge for Elodie, as did former Australian Football League star and EB ambassador Jonathan Brown, and former Major League Baseball All-Star Sean Casey. Music groups such as Raynes and Hooked Like Helen also did the plunge this year.

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Plunge for Elodie set to surpass $2M raised for EB disease research

Supporters celebrating 2 new EB treatments approved in US last year

The campaign also included the presentation of the 3rd Annual Sophia’s Hope Award, which celebrates the memory of Sophia Grace Ramsey, who died in 2020 at age 1 from EB complications. This year’s award went to Erika Tarantal for her “unwavering support and dedication” to the EB community, the release states.

Common symptoms of EB, which is marked by fragile skin that easily tears and blisters, include deformed fingernails and toenails, white skin bumps, and swallowing difficulties, as well as hallmark blisters.

Advocates hailed the results they say have come, in part, due to EB research funded by campaigns such as the Plunge for Elodie.

With the first FDA-approved EB treatments coming in 2023, the huge global growth of the Plunge for Elodie, and the incredible amount of momentum behind EB research — my family is filled with so much hope.

A first EB treatment was approved by the U.S. Food and Drug Administration (FDA) in May 2023. The gene therapy gel, called Vyjuvek (beremagene geperpavec), was specifically cleared for treating skin wounds in patients 6 months and older with dystrophic epidermolysis bullosa (DEB).

Seven months later, federal regulators in the U.S. also approved the therapy Filsuvez (birch triterpenes). It works to treat skin wounds in those with DEB or junctional epidermolysis bullosa (JEB), ages 6 months or older.

“With the first FDA-approved EB treatments coming in 2023, the huge global growth of the Plunge for Elodie, and the incredible amount of momentum behind EB research — my family is filled with so much hope,” Kubik said. “I am so proud of Elodie for being brave enough to share her story and inspire so many.”

Jill Vedder, the EBRP’s co-founder and chairwoman, said that “the amount of support we’ve received over the years has created momentum and gotten us to where we are today.”

Having two approved therapies for EB last year “would not be possible without support like this,” Vedder said. “And we will continue to work alongside this community until there is a cure for EB — and beyond.”