It’s the 6th Annual Plunge in Wellesley, Massachusetts, where all proceeds benefit the EB Research Partnership. EB (Epidermolysis Bullosa) is a devastating genetic skin disorder that affects children from birth. The Plunge for Elodie was created by 10 childhood friends of Elodie’s mom, Emily Kubik. Elodie was born in 2016 with a severe form of EB, facing a life expectancy of just 30 years.
Elodie is one of 500,000 people around the world suffering from EB. Children who have this disorder are called “Butterfly Children” because their skin is as fragile as the wings of a butterfly. They experience severe pain, open external and internal wounds, and a grueling daily bandaging process.
On this segment of YurView’s Simply New England, we take a look at this year’s recent plunge event and how the community rallied together for Elodie. Fun was had by all, while raising funds to find a cure for EB. Watch the video above, or read the full transcription below, lightly edited for clarity.
Epidermolysis Bullosa
Kristan Khtikian, Founder and Co-Chair, Plunge for Elodie (00:06) – Today is the Plunge for Elodie. We are at the sixth annual Plunge for Elodie and all of the proceeds from this event benefit the EB Research Partnership, the EBRP. And it’s all for the rare disease Epidermolysis Bullosa.
Michael Hund, CEO, EB Research Partnership (00:26) – EB is a life threatening, devastating genetic skin disease that affects children from birth.
KK (00:31) – People with the disease are missing a critical protein that produces collagen. So they have no collagen in their skin.
Emily Kubik, Elodie’s mom & EBRP Board Member (00:38) – The type that Elodie has, only 1500 people in the country have. She’s missing a critical protein which helps bind the layers of the skin together. So she wounds easily and has super fragile skin.
MH (00:52) – Kids that battle EB spend their day with hours of bandaging, bleach baths, doctor’s appointments. The thing that gives us hope and optimism is EB is caused by one genetic mutation that we know.
(01:03) – We believe with support of events like Plunge for Elodie, we can treat EB by the end of this decade. So our bold audacious mission is to cure EB by 2030 and lead the way with an innovative model that can help millions of people with the rare disease.
Plunge for Elodie
KK (01:17) – This event started in 2018 with a goal of raising $15,000. And look at us today. We are closing in on $2 million dollars raised for the cause.
EK (01:31) – My friends from high school after Elodie was born, they wanted to help us in any way that they could. And I said please help me cure this disease.
KK (01:39) – We wanted to make a splash for the cause. And it just organically came that a plunge was the perfect thing. And we’re now in our sixth year. And every year it gets bigger and more exciting.
MH (01:51) – It started on this beach with about 20 people.
EK (01:54) – And it just sort of exploded honestly from there.
KK (01:57) – And we now have satellite plunges around the globe. We have 10 satellite plunges and all involve EB families, which is so exciting.
Supporting EB Research
MH (02:06) – And really people were inspired to do something that is fun, that you can really rally your community. And this event has raised almost over $2 million for research and science to treat and heal EB. And it all started right here on this beach.
(02:23) – You know, Plunge for Elodie is such an amazing event. And I think it speaks to what communities can do to drive change. What we learn from Elodie and all young people that face EB every day is strength, courage, hope, optimism.
(02:40) – Elodie wakes up every day and she has fight. So that gives us fight and motivation and hope to do what we can and contribute our skills and our talents to finding a treatment for Elodie and all kids like her that battle this disease.
EK (02:54) – Rare diseases, you know, most people haven’t even heard of EB. It can be really challenging for them to raise money to fund critical research. Every dollar counts truly, and we just so appreciate the support. And take a plunge. It can be a bucket of water over your head. It can be in a very cold pond like this one. Anything counts.
MH (03:16) – Please join us. Learn more about Plunge for Elodie at plungeforelodie.org and ebresearch.org.
To watch more videos from Simply New England, check out SNE on YouTube. The show airs on YurView New England – Saturdays at 2pm & 9:30pm, Sundays at 7:30pm and Wednesdays at 9:30pm on Ch. 4 (RI), Ch. 128 (Hartford, CT area) and Ch. 2 (Holland, MA).
