Plunge for Elodie Raises $2.5M+ for Life-Saving Rare Disease Research in just 7 years

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May 07, 2024, 08:00 ET

Celebrities, sports teams, schools and supporters across 20+ locations worldwide take polar plunges to raise awareness and funds for rare genetic skin disorder called EB

NEW YORK, May 7, 2024 /PRNewswire/ -- From the shores of Wellesley, Massachusetts to the cold tubs of Adelaide, Australia the 7th annual Plunge For Elodie took the world by storm in April in order to raise awareness and funds for rare genetic disease called Epidermolysis Bullosa, or EB, and EB Research Partnership (EBRP).

EB Research Partnership Co-Founder, Jill Vedder, leads the Plunge for Elodie in Seattle alongside Patterson, a young boy living with Epidermolysis Bullosa (EB). Photo by Tim Durkan

Plunge for Elodie Committee Members stand proudly with Elodie Kubik at the 7th annual Plunge for Elodie in its original location in Wellesley, Massachusetts. Photo by Amanda Robertson

The Plunge was started by 10 childhood friends of Elodie's mom, EBRP Board Member Emily Kubik. Elodie was born in 2016 with a severe form of EB. She is one of 500,000 people around the world suffering from EB, and faces a life expectancy of just 30 years. Children with EB are called "Butterfly Children'' because their skin is as fragile as the wings of a butterfly. They face severe pain, open external and internal wounds, and a grueling daily bandaging process.

In 2024 alone the Plunge for Elodie raised more than $530,000 to fund life-saving research. This year's efforts have helped the event's fundraising total surpass $2.5M raised since 2018.

"With the first FDA-approved EB treatments coming in 2023, the huge global growth of the Plunge for Elodie, and the incredible amount of momentum behind EB research – my family is filled with so much hope. I am so proud of Elodie for being brave enough to share her story and inspire so many. I'm also so grateful for every single person who has joined us in this fight. Your donations, shares, fundraising efforts and plunges are truly making an impact and we will not stop until there is a cure for EB," says Emily Kubik, Elodie's mom and EB Research Partnership Board Member.

Supporters, EB families, advocates, and ambassadors alike took the #PlungeforElodie this year to make it an incredibly special and successful campaign. Some highlights were…

The Plunge for Elodie campaign raised +$530,000 in 2024 alone, and was proudly supported by corporate sponsors including the first-ever Presenting Sponsor, CSI Pharmacy, and five generous Title Sponsors, Abeona Therapeutics, Belkin Family Lookout Farm, Dellbrook JKS, iHeartMedia and Sohpia's Hope to Cure EB.
The Plunge for Elodie made its way down under and around the world with plunges taking place in Adelaide, Melbourne, Toronto, Okinawa and the U.K.
EBRP Co-Founders, Jill and Eddie Vedder, hosted a Plunge to support the cause alongside a young boy living with EB named Patterson, hundreds of local supporters and friends in Seattle joined in and jumped into the chilly waters of Alki Beach.
From TikTok stars Luke & Sassy Scott to AFL legend and Australian ambassador Jonathan Brown, former MLB All Star Sean Casey and musicians like Raynes and Hooked Like Helen, many ambassadors, athletes, musicians and teams took the Plunge to support EB.
The 3rd Annual Sophia's Hope Award was presented to Erika Tarantal for her unwavering support and dedication to the cause and EB community. This award celebrates the memory of Sophia Grace Ramsey, a one-year-old who tragically lost her battle with EB in May 2020.

"The amount of support we've received over the years has created momentum and gotten us to where we are today. I'm so genuinely proud and grateful for how our community continues to rally around this cause. The two FDA-approved treatments in 2023 would not be possible without support like this. And we will continue to work alongside this community until there is a cure for EB – and beyond," says Jill Vedder, Co-Founder and Chairwoman, EB Research Partnership.

All proceeds from the Plunge for Elodie go directly to EB Research Partnership. Since 2010, EB Research Partnership (EBRP) has raised over $60 million, funding more than 140 projects and effectively transforming the EB clinical trial landscape. From 2 clinical trials to over 40, including 2 FDA approved treatments, there has been remarkable progress made towards a cure for EB.

More information on how to donate and get involved can be found at www.plungeforelodie.org. You can also follow @plungeforelodie and @ebresearch on Instagram and Facebook.

About EB Research Partnership
Founded in 2010 by a dedicated group of parents along with Jill and Eddie Vedder of 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

About the Plunge for Elodie
Named after 7-year-old Elodie Kubik, who lives with a severe form of EB, the Plunge began as a local effort in Massachusetts, organized by childhood friends of Elodie's mom. They wanted to do more for the family than just offer emotional support. Thus, the first Plunge for Elodie took place in 2018.

Since 2018 the Plunge has raised over $2.5M for life-saving EB research and reached thousands across the globe. In 2024, there were 20+ Plunges for Elodie worldwide including in New York, Massachusets, North Carolina, Nashville, Melbourne, Seattle, Okinawa, and more!

To learn more, visit www.plungeforelodie.org

SOURCE EB Research Partnership