about the plunge
Join us for the 5th annual Plunge for Elodie, an event to raise awareness and funds for critical research to treat and cure Epidermolysis Bullosa (EB). Participants plunge into chilly bodies of water and create fundraising teams to help heal EB. This year's plunge events will take place in Connecticut, Massachusetts, and North Carolina. Even if you're unable to attend an in-person plunge, you're still encouraged to join the fun from wherever you are with our virtual plunge!
about the Cause
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5-year-old Elodie Kubik was born with Recessive Dystrophic Epidermolysis Bullosa (EB). Like all children with EB, Elodie is missing a critical protein that binds the layers of the skin together, making it extremely fragile and causing severe pain and wounds, both internal and external. Today, there are no treatments for this life-threatening disease.
Elodie's mom's friends wanted to do more for the family than just offer emotional support. As they learned about EB and the larger rare disease community, it became clear how desperately diseases like EB need funding to find treatments and cures. In short: every dollar truly matters. Thus, the first Plunge for Elodie took place in 2018. Now in its 5th consecutive year, the event has grown into an international movement with a goal to cross $1 million raised for critical research aimed at curing EB and other rare diseases. This year we announce the 1st Annual Sophia's Hope Award, created in honor of 1-year-old Sophia who lost her battle with EB but whose legacy lives on. Our 2022 award recipient, Mike Fish, honors Sophia with his steadfast devotion to the cause. Thank you, Mike – and thank you to all those who donate, Plunge, and support our mission! |
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about elodie5-year-old Elodie Kubik was born with Recessive Dystrophic EB. On a daily basis, Elodie must endure more than any young child ever should - eating complications, doctor visits, wounds, painful bandage changes, bleach baths, and more. Even still, Elodie's adorable demeanor is unfazed - she thrives at school, loves all things princess, has a burgeoning sense of humor, and is the best older sister to her brother Gus. In short, she is the sweetest little girl in the world. We could all learn so much from this beautiful 5-year-old warrior.
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about sophiaThe world was blessed when Sophia Grace Ramsey was born on April 20, 2019. Shortly after, Sophia was diagnosed with Junctional EB. Sophia fought the incredibly painful disease with unmatched courage. Despite suffering so much, her spirit was always bright, and she gave her family unimaginable joy. Sophia loved goofy songs, her dog, and spending time with her family. Her smile could brighten any moment. Eventually, the devastating effects of EB became too much for Sophia's tiny body to carry. On May 15, 2020, just a few weeks after celebrating her first birthday, Sophia returned home to heaven. Supporting vital EB research is important to Sophia's family, who continue to share her message through Sophia's EB Hope, donating proceeds to EB Research Partnership. They are deeply committed to giving children like Sophia a chance at a life free of pain and suffering. With your support, Sophia's Hope could one day become a reality.
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about BROOKSBrooks Kendrick is a sweet two-year-old boy with EB Simplex. He was born with large areas of totally missing skin, mostly on his extremities. To see him now it may not appear that he is in any way different from anyone else but he has scarring, missing nails and his skin blisters and breaks with every bump and fall. Like most two-year old boys, he loves to play outside, wrestle with his dog, and play with anything involving trucks and trains. In the evenings he gets to play with his tablet and watch his favorite shows as his parents soak his open wounds and bandage any area that needs protection. Brooks’ mother also has EB and can relate to everything he feels - like the sting of water touching a fresh wound or the pain of removing a dressing that is stuck to an open area. It amazes her how he tolerates this as a necessary part of his day. He is the strongest, sweetest, stubborn and most determined little boy with the cutest dimple! We pray these traits will allow him to do anything he sets his mind to in life.
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plunge in the press
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Rare skin disease won’t stop Greenwich toddler
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