This month’s Plunge for Elodie will be a virtual event for a first time, with participants worldwide encouraged to plunge into freezing waters at their respective locations to raise funds in support of new therapies for epidermolysis bullosa (EB).
People are asked to share videos of their plunge on social media by March 28, using the hashtag #PlungeForElodie2021, and the tags @ebresearch and @plungeforelodie.
Now in its fourth consecutive year, the event has become an international movement, with thousands of plungers over the years — including the actress Jessica Biel — raising over $700,000 to support research aimed at curing EB.
The Plunge for Elodie is promoted by EB Research Partnership (EBRP), whose co-founders include Jill and Eddie Vedder, a guitarist and lyricist with the rock group Pearl Jam. EBRP, which started in 2010, is now the largest global nonprofit organization dedicated to EB fundraising.
Named after 4-year-old Elodie Kubik, who lives with a severe form of EB, the plunge began as a local effort in Wellesley, Massachusetts, organized by childhood friends of Elodie’s mom, Emily.
“We asked how we could help the family, and Emily replied: ‘Help us save our daughter.’ So that’s just what we did — and what we will continue to do until a cure is reached,” Kristan Fletcher Khtikian, a plunge co-chair, said in a press release.
EB is primarily caused by a genetic mutation that makes the skin extremely fragile.
These mutations occur in genes encoding key proteins in binding skin layers — the epidermis (outer skin layer), the dermis (underlying layer), and the basement membrane zone, which is the interface between the dermis and epidermis. Young patients with EB are often called “butterfly children” due to the fragility of their skin.
EBRP is helping to fast-track a cure for EB, and for other rare conditions.
“Hope is on the horizon,” said Michael Hund, the CEO of EBRP. “Our work at EBRP has transformed the clinical trial landscape from just two trials in EB to over 30 today. We will proceed with laser-focused resolve until a cure is reached. It is often stated but cannot be underscored more that when it comes to a rare disease like EB, every dollar truly counts.”
This year’s Plunge for Elodie honors the memory of Sophia Grace Ramsey, a 1-year-old with EB who died in May 2020. Her family created Sophia’s Hope, a charity that has pledged a $30,000 matching fund for the Plunge for Elodie, and, together with Boston’s Trans National Group and the Belkin Family Lookout Farm, are hoping to inspire people worldwide to take the plunge.
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