EB Research Partnership Plunge for Patterson

EB Research Partnership Plunge for Patterson

DATE: Saturday, May 17, 2025

TIME: 1-3PM

LOCATION

The Rippole Residence

428 Wynstone Drive,

Wexford, PA

TICKETS

Free! - PLEASE RSVP TO LET US KNOW IF YOU WILL BE JOINING US

$10 suggested donation which will go to EB Research Partnership

will be serving up Tacos & drinks will also be provided!

Named after 8-year-old Elodie Kubik, who lives with a severe form of EB, the Plunge began as a local effort in Wellesley, Massachusetts, organized by childhood friends of Elodie’s mom. 

They wanted to do more for the family than just offer emotional support, and 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.

Visit give.ebresearch.org/plunge2025 for more information.

Nine-year-old Patterson lives with Recessive Dystrophic EB, a condition where simple scrapes often transform into severe wounds, requiring daily bandage changes that can take up to 2 or 3 hours. Preventative wrapping helps protect him during school and daily activities.

In the fall of 2023, Patterson received his first FDA-approved treatment for EB. Vyjuvek, a topical gene therapy, has made a remarkable difference. It accelerates wound healing, reduces infection risks, and minimizes inflammation and irritation. While this treatment has improved Patterson's quality of life, we need a cure.

The plunge means the world to Patterson and our family. The overwhelming sense of community and support at events like this inspires Patterson to advocate for EB families, bringing us closer to finding a cure. Additionally, we know the critical funding raised in this event goes directly to innovative research that is making such a large impact to the EB community and beyond. 

Patterson is a social "butterfly", especially if you resemble a grandma or grandpa. He's drawn to positive energy, loves music (particularly tunes from older generations), and wants to pet your dog.

He warmly invites you to join us at Alki Beach and plunge into the waters of the Puget Sound. He promises it will be a super fun time and can't wait to see you there.

Together, we can make a difference.

On July 15, 2016, Elodie was born with a rare genetic disorder called Epidermolysis Bullosa ("EB"). This disease means that Elodie is missing a critical protein that helps bind the layers of the skin together, making her skin extremely fragile. Her skin will break or blister frequently, with everyday contact. There are no cures for this disease right now.

Despite all of this and the resulting pain and discomfort from her disease, Elodie remains a happy, well-adjusted toddler - 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 8-year-old warrior. She inspires us to fight every day to bring her a much needed treatment, and ultimately a cure. We invite you to take the plunge with us and go all-in on the fight to #healEB and bring Elodie a much needed cure. All donations will benefit the EB Research Partnership, the largest non-profit dedicated to funding research aimed at treating and ultimately curing EB.

EB Research Partnership (EBRP) is the largest global nonprofit funding research to discover treatments and cures for EB. Combining our award-winning Venture Philanthropy business model and world-renown Scientific Advisory Board, we are creating a blueprint for how rare diseases can be cured. Donating to EBRP not only supports families fighting EB everywhere, but also has the potential to impact thousands of other rare diseases. Thanks to the long-standing support of our brave EB warriors, resilient EB families, brilliant medical experts, and generous donors, we have been able to raise over $60M for critical EB research, fund 140+ innovative global EB projects, accelerate the first FDA approved treatment for EB, and transform the clinical trial landscape by 20x since 2010. 

Visit ebresearch.org to learn more.

RESTRICTIONS

• Unauthorized/unlicensed vendors are not allowed.

• No unauthorized hand-outs, solicitation and materials, including, but not limited to handbills, flyers, stickers, beach balls, give-aways, samples, etc.

• Unauthorized professional cameras and professional recording (photo, video, audio) equipment are not allowed.

• Unauthorized large professional detachable zoom lenses, stands, monopods, tripods or selfie sticks are not allowed..

Wishlist Foundation is fan-run and not affiliated with Pearl Jam, Ten Club LLC, Vitalogy Foundation, its management or any of its related entities. Tax ID #20­5497732.