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

Supporters getting ready to plunge into icy waters March 25-April 2

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by Andrea Lobo, PhD |

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The 6th annual Plunge for Elodie is set to raise more than $2 million for epidermolysis bullosa (EB) research, EB Research Partnership (EBRP) has announced.

The event, taking place from March 25 to April 2, invites supporters to plunge into freezing waters at one of the official locations or from virtually anywhere in the world.

The plunge was named after Elodie Kubik, born in 2016 with a severe form of EB, and began as a small local fundraiser in Wellesley, Massachusetts. It was organized by 10 childhood friends of Elodie’s mother, Emily, who is also an EBRP board member.

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Plunge for Elodie has become a global movement

To raise awareness about the disease and funds for research, Plunge for Elodie has become a global movement with thousands of participants. Satellite plunges are found at the Greensboro Aquatic Center in Greensboro, North Carolina, as well as in Queens, New York; Greenwich, Connecticut; San Francisco, California; Ireland; and Toronto and Vancouver in Canada. A Virtual Plunge campaign is also happening on social media, with participants being asked to post their videos with the hashtag #PlungeForElodie.

The event has received Hollywood attention, with the actress Jessica Biel taking a Virtual Plunge in 2018. Elodie recently shared the plunge story together with Kermit the Frog.

“None of us had ever heard of EB when Elodie was born, but as we learned more about the disease — and witnessed the challenges that EB families face — we felt compelled to act,” Kristan Khtikian, Plunge for Elodie co-chair, said in a press release. “We formed this event with the goal of making a splash for the cause. And we won’t stop making a splash until a cure is reached.”

EB affects about 500,000 people worldwide. Children with this condition are called “Butterfly Children” as the fragility of their skin resembles the wings of a butterfly. Symptoms include internal and external blisters, deformed fingernails and toenails, swallowing difficulties, and tiny white skin bumps.

No cure for EB exists, but EBRP and Plunge for Elodie supporters are hoping to help find one.

“This hugely impactful event is making big waves for change,” said Michael Hund, CEO at EBRP. “We are more hopeful than ever that a much-needed cure is within reach.”

We formed this event with the goal of making a splash for the cause. And we won’t stop making a splash until a cure is reached.

Sophia’s Hope Award goes to philanthropists Steve and Joan Belkin

This year’s event will present the 2nd Annual Sophia’s Hope Award to philanthropists Steve and Joan Belkin for their dedication to the event. The award celebrates the memory of Sophia Grace Ramsey, a 1-year-old with EB who died in May 2020.

The family founded Sophia’s Hope to raise funds for EBRP. “We honor our beautiful daughter’s legacy as we raise money for the cause, with the great hope that others can have a life free from the unimaginable pain that our daughter faced,” said Katie Ramsey, Sophia’s mom.

The event’s corporate sponsors include Amryt Pharma, Dellbrook JKS, Belkin Family Lookout Farm, Sophia’s Hope, Trans National Group, Abeona Therapeutics, and UniBank.

EBRP is the largest global nonprofit organization working to fund research into treating and curing EB. It was funded in 2010 by dedicated parents, and Jill and Eddie Vedder (lead singer for the American rock band Pearl Jam).

The organization uses a venture philanthropy business model, in which the return on investment in therapies or products that reach commercial success is used to fund additional research.