#USA #Wellesley #EB Research #Plunge for Elodie #Epidermolysis Bullosa

The 8th Annual Plunge for Elodie Set for 2025

The 8th annual Plunge for Elodie is slated to take place from March 15 to May 17, 2025, marking a significant milestone in the fundraising initiative led by the EB Research Partnership (EBRP). Initially launched as a small community event, the Plunge has blossomed into a global movement aimed at raising awareness and funds for Epidermolysis Bullosa (EB), a rare and devastating genetic skin disorder.

EB affects approximately 500,000 individuals worldwide, characterized by extremely fragile skin that blisters and tears easily. Known as “Butterfly Children,” those with EB face not only physical pain but also the emotional toll of a condition that significantly impacts their quality of life. Elodie, the inspiration for the Plunge, embodies the challenges faced by these children, living with a severe form of EB since her birth in 2016.

The Growth of a Grassroots Initiative

The Plunge for Elodie was initiated by a close-knit group of friends led by Emily Kubik, a board member of the EBRP and Elodie's mother. Fueled by love and compassion, this group aimed to create a greater understanding of the struggles faced by families battling EB, facilitating both community engagement and funding for research. The original plunge in Wellesley, Massachusetts, has now expanded to encompass over 21 locations globally, including cities like Chicago, Nashville, Sydney, and even in Japan and Canada.

In 2025, the Plunge aims to garner $600,000, which would bring the total funds raised since the event’s inception in 2018 to over $3 million. This ambitious goal represents the collective spirit of the plungers, families, and supporters working together to foster change.

Exciting Collaborations and Celebrity Endorsements

An exciting collaboration has emerged from this year’s event, thanks to MAHI GOLD, a clothing company from Chatham, Massachusetts. The company has launched an exclusive butterfly print clothing line, with a portion of the proceeds dedicated to EB research efforts. Rebecca Voelkel, the owner of MAHI GOLD, believes this collaboration can raise awareness and funds to support critical EB research initiatives. “We hope this collaboration drives public awareness for EB while also raising funds to support critical EB research,” she remarked, emphasizing the significance of community partnership.

Moreover, the Plunge for Elodie has garnered support from various celebrities over the years. Actress Jessica Biel joined the movement in 2018, taking a virtual plunge, while Elodie herself has narrated her story alongside notable figures like Emma Watson and Kermit the Frog, spreading the message of hope and awareness.

How to Participate

The event invites supporters to partake in their local plunges or to engage in the Virtual #PlungeForElodie on social media, promoting the cause and raising funds. For those unable to participate in person, creating independent plunging events is encouraged. Specific events are scheduled throughout March and April in various locations, culminating in the final plunge in Pittsburgh, Pennsylvania.

The Plunge for Elodie is made possible thanks to its dedicated corporate sponsors, including Chiesi Global Rare Diseases, Belkin Family Lookout Farm, and Dellbrook | JKS. Their contributions empower the EBRP to push the envelope in EB research.

Milestones in EB Research

The efforts of the EBRP have been monumental in the quest for EB treatments. Since its founding, the partnership has raised over $70 million for research, enabling significant advancements in the field. From two clinical trials yawning to nearly 50 in recent years, the partnership has played a pivotal role in developing FDA-approved treatments for EB—a massive victory for the rare disease community.

The progress achieved signals that the Plunge for Elodie is much more than a fundraising effort; it is a platform for change, raising not only funds but also awareness about EB. The EBRP operates under a venture philanthropy model, reinvesting any profit from successful treatments back into further research.

A Future Filled with Hope

EBRP CEO Michael Hund stated, “When that cure is reached, the Plunge for Elodie will have been an integral part of that milestone.” This vision underscores a united effort not just among participants but within a broader community advocating for EB research.

For additional details on participating, donating, and learning more about the impact of the Plunge for Elodie, visit www.plungeforelodie.org and follow their social media accounts for updates.

Together, let’s make a splash for Elodie and the countless others affected by EB. The fight for a cure is ongoing, and every contribution counts.