9th Annual Plunge for Elodie Poised to Surpass $3.5 Million Raised for EB Research Partnership

WELLESLEY, Mass., March 3, 2026 /PRNewswire/ -- EB Research Partnership (EBRP) announces the 9th Annual Plunge for Elodie, taking place March–May 2026, with events across 4 continents. What began as a small hometown fundraiser has grown into a global movement, uniting thousands who brave icy waters to raise critical funds and awareness for Epidermolysis Bullosa (EB), a rare and life-threatening genetic skin disorder.

This year marks a milestone for the Plunge for Elodie, with a diverse series of events worldwide and an ambitious $600,000 fundraising goal, pushing the movement past $3.5 million raised for life-saving EB research since 2018. Further accelerating momentum, all donations to EB Research Partnership are currently being matched dollar-for-dollar through a $1,000,000 matching gift from philanthropist Dr. Jeff Heddles, effectively doubling every contribution until the full match is achieved and amplifying the impact for families affected by EB.

From One Child to a Global Wave
The Plunge for Elodie was created by 10 childhood friends of Elodie's mother, EBRP Board Member Emily Kubik. Elodie was born in 2016 with a severe form of EB, a condition affecting approximately 500,000 people worldwide. Known as "Butterfly Children," those living with EB endure extreme pain, fragile skin, and daily, intensive wound care.

"None of us had ever heard of EB before Elodie was born," says Kristan Khtikian, Plunge for Elodie Co-Chair. "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."

What began in Wellesley, Massachusetts now spans the globe, with Plunge events in cities including Seattle, WA; Los Angeles, CA; Pittsburgh, PA; New York, NY; Denver CO; San Jose, Costa Rica; North Devon, UK; Adelaide, Australia; Melbourne, Australia and beyond. The movement has drawn support from millions worldwide, including public figures such as Jessica Biel and Emma Watson, helping amplify awareness of EB on a global stage.

Honoring Extraordinary Commitment
At this year's Plunge for Elodie, Chiesi Global Rare Diseases will be honored with the Sophia's Hope Award, recognizing individuals or organizations that have demonstrated steadfast commitment to the Plunge for Elodie movement and the EB community.

Chiesi's involvement goes far beyond sponsorship — their employees proudly take the Plunge for Elodie together each year, standing shoulder-to-shoulder with EB families and supporters in a powerful show of solidarity.

How to Get Involved
Supporters can join an in-person Plunge, participate in a Virtual #PlungeForElodie, or create their own fundraising event. The Plunge for Elodie is proudly supported by corporate partners including Chiesi Global Rare Diseases, Belkin Family Lookout Farm, Dellbrook | JKS, Sophia's Hope, and others. Those moved to give can now amplify their impact through the Matter of Time $1 Million Match, a transformational matching gift that will double every donation to EB Research Partnership, including gifts made through the Plunge, until $1,000,000 is reached.

Real Progress Toward a Cure
Since 2010, EBRP has raised over $80 million, funding more than 180 EB research projects worldwide. These efforts have helped drive the EB field from just two clinical trials to over 50, and from zero treatments to three FDA-approved treatments in the past two years alone — a remarkable achievement in a rare disease landscape where 95% of conditions have no approved treatments.

"This grassroots event has become a powerful force for change," says Michael Hund, CEO of EBRP. "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."

A Global Spotlight on EB
This year's Plunge events come on the heels of a historic moment in rare disease history, as Matter of Time — the powerful documentary weaving together Eddie Vedder's 2023 solo concerts with the stories of patients, families, researchers, and advocates working toward a cure — is now streaming globally on Netflix. The film continues to shine an unprecedented spotlight on EB, bringing the urgency, innovation, and humanity of this movement into homes around the world.

Together, the global visibility of Matter of Time and the growing energy behind the Plunge movement are turning awareness into action and action into real, life-changing breakthroughs for families around the globe.

For more information or to get involved, visit www.plungeforelodie.org and follow @plungeforelodie on Instagram and Facebook.

About EB Research Partnership
Founded in 2010 by a dedicated group of parents along with Jill and Eddie Vedder of Pearl Jam, EB Research Partnership (EBRP) is the largest global nonprofit dedicated to funding research to accelerate treatments and find a cure for Epidermolysis Bullosa (EB), a group of devastating and life-threatening skin disorders that affect children from birth.

When making a grant to a research project, EBRP utilizes a Venture Philanthropy model. They retain the added upside of generating a recurring revenue stream if the therapy or product is commercially successful, then use the return on investment to fund additional EB research until a cure is found. While EB is a rare disease, there are 10,000 rare diseases that affect 1 in 10 people in the world, 95% of which have no treatments, that can benefit from the research they fund and this innovative model.

To learn more, visit www.ebresearch.org.
For more information on Matter of Time, visit www.matteroftimefilm.com.

SOURCE EB Research Partnership