NEW YORK, March 10, 2022 /PRNewswire/ – EB Research Partnership (EBRP) announces the 5th annual Plunge For Elodie scheduled for March 26 – March 27, 2022. This now-global movement invites participants to plunge into freezing waters, whether virtually or in person, to fundraise for the life-threatening rare genetic disorder Epidermolysis Bullosa (EB). 2022 marks a groundbreaking year as the Plunge for Elodie is set to surpass $1 million raised for the EBRP. “There are currently no treatments or a cure for this disease, so every dollar raised by this event makes a tremendous impact,” states EBRP CEO Michael Hund.
What began as a small hometown fundraiser now includes 4 national Plunge locations: a main Plunge in Massachusetts plus satellite Plunges in North Carolina, New York, and Connecticut, and a far-reaching Virtual Plunge campaign on social media. Past satellite Plunge locations have included California, England, and Ohio. The cause has drawn thousands of Plungers around the globe and has even captured the eyes of Hollywood, with actress Jessica Biel taking a Virtual Plunge in 2018. This year, Chris Ulmer of Special Books By Special Kids (SBSK), a nonprofit organization seeking to normalize the diversity of the human condition, will take the Plunge in honor of John Hudson Dilgen, a young man living with severe EB whose story has inspired millions around the world. Along with filming the Plunge, SBSK will share a video interview with John Hudson on their social channels, which have amassed over 2 billion views. The Plunge for Elodie is proof that determination and dedication CAN make a difference.
The Plunge for Elodie is planned by 10 childhood friends of EBRP Board Member Emily Kubik, whose daughter Elodie was born in 2016 with a severe form of EB. Called “Butterfly Children” because their skin is as fragile as the wings of a butterfly, children with EB face severe pain, open external and internal wounds, and a grueling daily bandaging process. Elodie is 1 of 500,000 people in the world suffering from EB, and she faces a life expectancy of just 30 years old. “None of us had even heard of EB when Elodie was born, but as we witnessed first-hand just how devastating this disease was, we felt compelled to act. We asked Emily how we could help, and she replied, ‘Help us save our daughter.’ So that’s just what we did; we came together and formed this event with the goal of making a splash for the cause. We remain as devoted today as we were 5 years ago. We won’t stop Plunging – and fundraising – until a cure is reached,” states Kristan Fletcher Khtikian, Plunge for Elodie Co-Chair.
The Plunge for Elodie proudly introduces the 1st Annual Sophia’s Hope award this year, which will be presented to Michael Fish, President and C.E.O of Dellbrook | JKS. Michael has been deeply devoted to this cause since it began, donating his time and energy, as well as enthusiastically taking the Plunge each year. The award commemorates the memory of Sophia Grace Ramsey, a one-year-old who tragically lost her battle with EB in May 2020. Sophia’s family created a charity called Sophia’s Hope to fundraise for EBRP thereafter. “We honor our beautiful daughter as we strive to raise money for the EBRP, so that children like Sophia can have a chance at a life free from unimaginable pain and suffering,” says Sophia’s mom, Katie Ramsey.
Despite the lack of treatments for EB currently, EBRP’s innovative model is helping to fast-track therapies that could affect not just EB, but thousands of other rare diseases too. “Hope is on the horizon,” states EBRP CEO Michael Hund. “Our work at EBRP has transformed the clinical trial landscape from just 2 trials in EB to over 30 today. We will proceed with laser-focused resolve until a cure is reached. And it is movements like the Plunge for Elodie that help accelerate that timetable.”
More information on how to donate and get involved can be found at www.plungeforelodie.org. Also follow @plungeforelodie on Instagram and Facebook.
About EB Research Partnership
Founded in 2010 by a dedicated group of parents and Jill and Ed Vedder (Pearl Jam), EB Research Partnership (EBRP) is the largest global nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa (EB), a group of devastating and life-threatening skin disorders that affect children from birth.
Working around the clock with offices in the US and Australia, EBRP utilizes an innovative venture philanthropy business model. When making a grant to a research project, they retain the added upside of generating a recurring revenue stream if the therapy or product is commercially successful, then use the return on investment to fund additional EB research until a cure is found.
To learn more, visit www.ebresearch.org
Contact:EB Research Partnership Stephanie Ishoo, +1-646-844-0902[email protected]
SOURCE EB Research Partnership