This Sunday from 9 to 11 a.m., the EB Research Partnership will hold the 6th annual Plunge For Elodie in Greenwich to raise funds for research into Epidermolysis Bullosa a rare disease that carries a life expectancy of 30 years.
Elodie, a 6-year-old Greenwich child, has the disease, and her family is determined to get her lifespan extended.
— This article was previously published by GreenwichFreePress.com.
Contributed photo
The Plunge for Elodie is named after Elodie, a 6-year-old Greenwich girl.
The “Plunge” in Greenwich will take place at Lucas Point in Old Greenwich (next to Tod’s Point). Park at Tod’s Point. The Greenwich event is one of many taking place around the globe between March 25 and Sunday, April, 2, 2023.
Elodie’s mother Emily Kubik said the entire Riverside School community has mobilized for this event.
“Each grade level has a fundraising team,” she said. “The student council is selling bracelets and the riverside rangers are helping to set up and clean up and make sure everything goes smoothly.”
On Sunday, teachers and administrators at Elodie’s school (Riverside School) will be plunging alongside students and parents.
How It Started
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 she faces a life expectancy of just 30 years.
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 felt compelled to act,” said Kristan Khtikian, Plunge for Elodie co-chair. “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.”
The Plunge for Elodie has evolved from a small hometown fundraiser into a global movement, inviting participants to plunge into freezing waters to raise awareness and funds for the life-threatening rare genetic disorder Epidermolysis Bullosa.
The original Plunge for Elodie site of Wellesley, Massachusetts is now accompanied by satellite plunges around the globe: the Greensboro Aquatic Center in Greensboro, North Carolina; Queens, New York; Greenwich; San Francisco; Ireland; Toronto; and Vancouver, British Columbia in Canada (hosted by Talk Shop Media); plus a robust Virtual Plunge campaign on social media.
The cause has drawn thousands of participants and has even captured the eyes of Hollywood, with actress Jessica Biel taking a Virtual Plunge in 2018. Elodie also recently captured Hollywood’s heart as she shared the plunge story in her own words, alongside Kermit the Frog.
“We are approaching $2 million raised since the event started six years ago,” Emily said.”I t is without a doubt one of most successful rare disease fundraisers ever. It is a celebration for the community who has been all-in on supporting Elodie and us since Day 1.
Sophia’s Hope Award
The Plunge for Elodie will present the 2nd Annual Sophia’s Hope Award to philanthropists Steve and Joan Belkin (Trans National Group, Belkin Family Lookout Farm), whose dedication to this event has been unwavering.
This award celebrates the memory of Sophia Grace Ramsey, a one-year-old who tragically lost her battle with EB in May 2020. Sophia’s family founded Sophia’s Hope to fundraise 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 Sophia’s mom, Katie Ramsey.
There are currently no treatments or a cure for EB, but the Plunge for Elodie is helping to change that statistic. The movement shows first-hand the power of steadfast determination:
“This hugely impactful event is making big waves for change,” said EBRP CEO Michael Hund. “We are more hopeful than ever that a much-needed cure is within reach.”
For a full list of Plunge for Elodie sponsors, visit the Plunge for Elodie website.
More information on how to donate and get involved can be found online, here. You can also follow @plungeforelodie on Instagram and Facebook.