8th Annual Plunge for Elodie Poised to Surpass $3 Million Raised for EB Research Partnership

Small hometown fundraiser turned global movement for rare disease to be held across 21+ locations worldwide

WELLESLEY, Mass., Feb. 28, 2025 /PRNewswire/ -- EB Research Partnership (EBRP) announces the 8th annual Plunge for Elodie scheduled for March 15 - May 17, 2025. Since its inception, the Plunge for Elodie has evolved from a small hometown fundraiser into an impactful global movement, inviting participants to plunge into freezing waters to raise awareness and funds for the rare, life-threatening genetic skin disorder Epidermolysis Bullosa (EB). 2025 marks a groundbreaking year for the Plunge for Elodie with more than 21 events across six countries and a fundraising goal of $600,000, which would help the movement's fundraising total surpass $3M raised for life-saving EB research since 2018. The Plunge for Elodie has even inspired a special collaboration with MAHI GOLD, a clothing company with roots in Chatham, MA. A portion of the proceeds from Elodie's exclusive butterfly print will benefit the cause: "We hope this collaboration drives public awareness for EB while also raising funds to support critical EB research," states MAHI GOLD owner Rebecca Voelkel. We are excited to give Elodie and other girls something soft and comfortable to wear that makes them smile."

LOCAL FRIENDS IN WELLESLEY, MA INSPIRED A GLOBAL MOVEMENT

The Plunge for Elodie was created by 10 childhood friends of Elodie's mom, EBRP Board Member Emily Kubik. Elodie was born in 2016 with a severe form of EB. She is one of 500,000 people around the world suffering from EB and faces a life expectancy of under 30 years old. Children with EB are called "Butterfly Children'' because their skin is as fragile as the wings of a butterfly. They face severe pain, open external and internal wounds, and a grueling daily bandaging process.

"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 were compelled to act. We started this event with the goal of making a splash for the cause. Eight years later, our small splash has turned into a global wave, and we won't stop plunging until a cure is reached," vows Kristan Khtikian, Plunge for Elodie Co-Chair.

The original Plunge for Elodie site of Wellesley, MA is now accompanied by 20 Plunge locations across the globe - from Greensboro, NC, Seattle, WA, Chicago, IL and Nashville, TN, to Okinawa, Japan, Adelaide, Australia, Niagara-on-the-Lake, Canada, and beyond.

Since its inception, the Plunge for Elodie has captured the hearts of many and has multiplied with the help of local communities, EB families, and celebrities like actress Jessica Biel who took a virtual Plunge for Elodie in 2018. Elodie shared the Plunge story in her own words, alongside Emma Watson and Kermit the Frog. The Plunge for Elodie has grown to more than 2 million supporters worldwide.

HOW TO GET INVOLVED

Supporters are invited to join a local Plunge to show support and raise funds for all children battling EB. Those who do not live near a plunge location can participate in the Virtual #PlungeForElodie campaign on social media or create their own site.

2025 PLUNGE FOR ELODIE DATES & LOCATIONS

• March - April: Virtual Plunges
• Saturday, March 15:
  • Greensboro, NC. Top fundraisers will be entered into a drawing to win an exclusive painting by artist Hilary Clement.
  • San Jose, Costa Rica
• Saturday, March 22: Wellesley, MA. Top fundraisers will be entered into a drawing to win 4 tickets to the 4 premium Dell Technologies Club tickets to a mutually agreed upon Red Sox game.
• Sunday, March 23: New York, NY
• Saturday, March 29: Melbourne, Australia
• Sunday, March 30:
  • Seattle, WA
  • Sydney, Australia
• Saturday: April 5:
  • Greenwich, CT
  • Mornington Peninsula, Australia
• Saturday, April 12: Adelaide, Australia
• Wednesday, April 30: Doylestown, PA
• Saturday, May 17: Pittsburgh, PA. Top fundraisers will be entered into a drawing to win an exclusive Pearl Jam-themed Prize Pack.
• Date TBC:
  • Chicago, IL
  • Denver, CO
  • Los Angeles, CA
  • Marco Island, FL
  • Nashville, TN
  • Niagara-on-the-Lake, Canada
  • North Devon, UK
  • Okinawa, Japan

The 2025 Plunge for Elodie is proudly supported by leading corporate sponsors including: Chiesi Global Rare Diseases, Belkin Family Lookout Farm, Dellbrook | JKS, Sophia's Hope, and many others. For a full list of Plunge for Elodie sponsors, visit the Plunge for Elodie website.

PROGRESS TOWARDS A CURE

Since 2010, EBRP has raised $70M+ to fund over 160 innovative EB research projects. This work has led to a transformation of the EB landscape, from 2 clinical trials to now nearly 50, over half of which EBRP has directly funded, and from zero treatments to 2 FDA approved treatments in 2023 alone.

These approvals are not only a landmark victory for EB warriors, but a huge milestone for the rare disease community at large. Currently, 95% of rare diseases lack an FDA approved treatment — and every Plunge for Elodie supporter is part of the team that helped EB cross over into the 5%.

Since last year's Plunge for Elodie, EBRP has utilized the event's fundraising success to support 18 impactful EB research projects, spanning 6 different countries, covering all EB subtypes, and creating a diverse portfolio of options to combat EB including gene editing and gene therapies, stem cell therapies, cancer therapies, immune therapies, antibody therapies, technology platforms, and more.

The Plunge for Elodie shows first-hand the power of steadfast determination: "This grassroots event has grown into a global movement and is making a huge impact," states EBRP CEO Michael Hund. "We've set the goal of a cure for EB by the year 2030. And when that cure is reached, the Plunge for Elodie will have been an integral part of that milestone."

More information on how to donate and get involved can be found at www.plungeforelodie.org. Also 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.

SOURCE EB Research Partnership