NEW YORK, March 9, 2021 /PRNewswire/ -- EB Research Partnership (EBRP) announces the 4th annual Plunge For Elodie, an event where participants plunge into freezing waters to fundraise for research aimed at discovering therapies for Epidermolysis Bullosa (EB), a rare and life-threatening genetic skin disorder. For the first time, the Plunge for Elodie is a virtual event, encouraging global engagement as participants are asked to plunge from their respective locations and share videos to social media by March 28, 2021. More information on how to donate and get involved can be found at www.plungeforelodie.org.
The Plunge for Elodie is named for 4-year-old Elodie Kubik, who lives with a severe form of EB and faces a life expectancy of just 30 years old. The event began as a local effort in Wellesley, MA planned 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," states Kristan Fletcher Khtikian, Plunge for Elodie Co-Chair.
Since the first event in 2018, the Plunge for Elodie has grown into an international movement with global satellite plunge locations and thousands of plungers over the years, including actress Jessica Biel. To date, the event has raised over $700,000 for critical EB research.
This year, the Plunge for Elodie honors 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 thereafter. "We honor our beautiful daughter as we strive to raise money for 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. This year, together with Boston's Trans National Group and Belkin Family Lookout Farm, Sophia's Hope has created a $30,000 matching fund for the Plunge for Elodie, hopefully inspiring the world to take the plunge, take action, and get involved.
EB affects approximately 500,000 people worldwide. 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. There is currently no treatment or cure for EB. However, EBRP's innovative model is helping to fast-track not only a cure for EB, but therapies that could affect thousands of other rare diseases. "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. It is often stated but cannot be underscored more that when it comes to a rare disease like EB, every dollar truly counts."
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
EB Research Partnership
Stephanie Ishoo, +1-646-844-0902
SOURCE EB Research Partnership