Nearly 200 community members from Wellesley and beyond earlier this spring gathered, towels and swim caps in hand, bracing themselves for chilly water to support 9-year-old Elodie Kubik. She lives with EB, a genetic condition that makes skin more fragile, causing blistering from even the slightest friction or exposure to heat. 

“What it means is lots of bandages, bandage changes every day or every other day. So it’s very hard on Elodie, but she’s a real trooper,” said her father, David Kubik.

 
The ninth annual “Plunge for Elodie” fundraiser brought together the community at Morses Pond Beach on Saturday, April 4, to raise awareness for epidermolysis bullosa, a rare skin disease with no cure. The proceeds raised support the EB Research Partnership, an organization dedicated to funding EB research for treatment development aimed at finding a permanent cure. 

Wearing matching swim caps reading “Plunge for Elodie” and “#healEB,” participants gathered at the edge of the pond. When it was time, Wellesley High School athletic teams and the Wellesley College swim and dive team raced into the water in groups, cheered on by family and friends. 

“Rain or shine, we’re here,” said Kristan Khtikian, one of the event organizers. 

The Wellesley High School track team has participated in the plunge since its early years in 2018, and this year saw one of its largest turnouts with more than 40 athletes. Their coach, John Griffith, noted the team’s connection to Elodie’s family, as her mother, Emily Kubik, ran for the track team during her time as a student at Wellesley High School. 

“It’s just a tremendous cause,” said Griffith. “Anything we can do as a track team or a community to help out somebody that you know that needs help — we’re going to find a cure for this disease, and we’re just really proud to be here.” 

Elodie stood with her family as students and parents paused to speak with her, offering their support and excitement for the event. 

“The things that poor girl goes through on a daily basis is something we want to help get rid of someday,” Griffith said. 

Tom Coogan, whose daughter participated in the plunge with her track team, said they saw many familiar faces at the plunge. 

“It’s a really nice Wellesley community event,” Coogan said. 

Lana Richard, a student on the Wellesley College swim and dive team who helped plan the team’s participation in the event, said she was glad to support a “really good cause.” The team has participated in the plunge in past years as well. 

“I think this is a really good, fun way to get people involved, to get them aware of this stuff, especially at a young age,” Richard said. “I thought it was going to be colder, but it felt really nice and refreshing.” 

Plunge for Elodie began in 2018, about a year after Elodie was born, when her mother, Emily Kubik and a group of friends organized the first plunge in Wellesley. “They all kind of did it together,” David Kubik said. “This is where it started, the very first one.” 

Since then, the initiative has expanded far beyond Wellesley to locations across the globe, including Australia and Costa Rica. To date, the initiative has raised over $3.5 million, according to Khtikian. The organizers set a goal of fundraising $600,000 this year and have already raised $400,000, she said. 

The Plunge for Elodie committee members organized the event and were the first to plunge into the pond wearing matching, pink swim caps and T-shirts that read “Team Elodie.”

“I’m freezing,” Khtikian said after she and her fellow committee members ran in together holding hands to kick off the event. 

“Every dollar we raise goes directly to research, which we’re really proud of,” David Kubik said. He said the funds are used to compensate staff at EBRP, doctors, scientists and fund clinical trials. 

“The goal absolutely is a cure,” he said.  

There are limited treatments for EB that are currently available and FDA-approved, according to David Kubik. While Elodie is still able to live a typical life and attend school, she has to manage the risks of EB every day. 

“She still has the wounds, she still has the bandages, which is why we’ll keep fighting for a cure,” her dad said. 

 

This story was produced through a partnership between The Swellesley Report and Boston University’s Department of Journalism.