$1M matching gift supercharges the 9th annual Plunge for Elodie
Global event aims for record-breaking $600K year to fund an EB cure by 2030
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What began as a few friends jumping into icy Massachusetts waters to support a neighbor has surged into a global movement, with the 9th annual Plunge for Elodie set to raise millions for epidermolysis bullosa (EB) research this spring.
Running from March through May, the fundraiser has expanded to the U.S., the U.K., Australia, and Costa Rica, fueling a movement that aims to find a cure for the “butterfly skin” disease by 2030.
This year’s campaign is supercharged by a $1-million matching gift from philanthropist Jeff Heddles, potentially turning the grassroots “splash” into a record-breaking wave of funding for the EB Research Partnership (EBRP), an organization dedicated to investing in research to find treatments for EB and an eventual cure.
“This grassroots event has become a powerful force for change,” Michael Hund, CEO of EBRP, said in a press release. “With a goal of a cure by 2030, the Plunge for Elodie is playing a vital role in transforming what’s possible for EB families.”
Small-town splash becomes global wave
The Plunge for Elodie began as a small gathering put together by friends of Emily Kubik, a current member of the EBRP board whose daughter, Elodie, lives with EB. Since that first event in Massachusetts, the movement has expanded worldwide. This year, the Plunge aims to raise $600,000 to support EB research. If that goal is reached, the event will have raised more than $3.5 million in total since its inception in 2018.
“None of us had ever heard of EB before Elodie was born,” said Kristan Khtikian, co-chair of Plunge for Elodie. “Nine years later, what started as a small splash has become a global wave — and we won’t stop plunging until there’s a cure.”
At this year’s event, the Sophia’s Hope Award, which recognizes individuals or organizations that have demonstrated a strong commitment to the EB community, will be presented to Chiesi Global Rare Diseases. Chiesi markets Filsuvez (birch triterpenes), a gel therapy approved to help promote wound healing in people with dystrophic EB or junctional EB. Filsuvez is one of three EB treatments to win approval in the U.S. over the last three years. Before that, there were no approved EB therapies.
This year, donations to the EBRP are being matched dollar-for-dollar up to $1 million through a gift from Heddles, a former chiropractor who turned his focus to philanthropy after retiring and selling his father’s steel business.
“This match is my way of transforming a moment of attention into real momentum, fueling the research that can deliver a cure for EB and showing how EBRP’s model can accelerate breakthroughs for thousands of other rare diseases,” Heddles said in a separate press release. “To every family living with EB, you are not alone. And to anyone who’s been watching this movement from the sidelines, I hope this makes it clear. The work is real, the momentum is here, and together we can push it forward faster.”
From Pearl Jam to a documentary on Netflix
Heddles’s donation aims to build on the momentum from the Matter of Time documentary, which chronicles advances in EB research and recently started streaming on Netflix.
“Matter of Time captures what I’ve come to believe deeply,” Heddles said. “Progress happens when people show up, again and again, by refusing to look away. And we can see that progress happening.”
Heddles became involved with EBRP a few years ago after he learned about EB at a Pearl Jam concert. Pearl Jam’s singer, Eddie Vedder, is a longtime EB advocate and co-founder of the EBRP. The Matter of Time documentary chronicles two solo concerts he performed in 2023 to raise funds for EB research, along with interviews with researchers and families affected by EB.
A year before those charity concerts, at a Pearl Jam show in 2022, Heddles noticed a heavily bandaged boy onstage playing the tambourine. This prompted him to learn more about EB, and he has since become a major supporter of the EBRP. This most recent matching gift is his largest yet to the organization.
“As a father of a child with EB and a board member of EBRP, I want to thank Dr. Jeff Heddles for his incredible generosity with the Matter of Time $1 Million Match,” said Nathan Burmeister, a board member of the EBRP whose son has recessive dystrophic EB. “After being moved by the outpouring of support for previous matches, he has stepped up in an even bigger way.
“Beyond that, Jeff has traveled the world to support EBRP, including visiting us here in Australia,” Burmeister added. “His unwavering commitment to the EB community means more than words can express. We are deeply grateful for everything he’s done to help bring us closer to treatments, and a cure, for EB.”
