8th Annual Plunge for Elodie Poised to Surpass $3 Million Raised for EB Research Partnership2/28/2025
EB Research Partnership (EBRP) announces the 8th annual Plunge for Elodie scheduled for March 15 - May 17, 2025. Since its inception, the Plunge for Elodie has evolved from a small hometown fundraiser into an impactful global movement, inviting participants to plunge into freezing waters to raise awareness and funds for the rare, life-threatening genetic skin disorder Epidermolysis Bullosa (EB). 2025 marks a groundbreaking year for the Plunge for Elodie with more than 21 events across six countries and a fundraising goal of $600,000, which would help the movement's fundraising total surpass $3M raised for life-saving EB research since 2018.
Michael Hund, CEO of EBRP, was recently selected as Top CEO of the Year in Medical Research 2025 by the International Association of Top Professionals (IAOTP) for his outstanding leadership, dedication, and commitment to the healthcare industry. Inclusion with the International Association of Top Professionals is an honor in itself; only a few members in each discipline are chosen for this distinction. These special honorees are distinguished based on their professional accomplishments, academic achievements, leadership abilities, longevity in the field, other affiliations, and contributions to their communities.
A special connection between the GIANTS and one of the biggest rock bands of all time took centre stage at ENGIE Stadium on Thursday night at Pearl Jam's Sydney concert. Performing the final leg of their Dark Matter World Tour in front of a sold-out ENGIE Stadium- the home of the GIANTS- Pearl Jam and their famed front man Eddie Vedder took time to thank the GIANTS for their support in a cause close to Vedder’s heart.
Iconic Pearl Jam frontman Eddie Vedder brought Brisbane Lions legend Jonathan Brown on stage during the band’s Melbourne show at Marvel Stadium on Saturday night. A photo from the crowd shows Brown, a three-time AFL premiership champion, with guitar in hand alongside Vedder in front of the packed stadium. “Jonathan Brown got called on stage by Eddie Vedder as ‘my mate Browny’ tonight in Melbourne,” AAP’s Oliver Caffrey said on social media.
AusBiotech 2024 is Australia’s premier life science conference and the flagship event of Australia’s biggest week in biotech. This year will be the biggest programme to date, featuring over 60 engaging sessions and more than 200 speakers in Melbourne from 30 October-1 November.
The GIANTS are proud to continue their partnership with EB Research Partnership (EBRP), dedicating the final home game of the season at ENGIE Stadium to raise crucial funds for those battling Epidermolysis Bullosa (EB). As a charity partner of the GIANTS, EBRP is thrilled to align their match day with Members Round, honouring and celebrating the support of valued GIANTS members while celebrating the courage of those battling EB, and all rare diseases, worldwide. “We are proud to partner with EBRP,” said GIANTS CEO David Matthews. “This Members Round, we are thrilled to highlight our partnership and the fantastic initiatives we’ve achieved together this year, as well as continue to support the critical, life-saving work made possible by EB Research Partnership.”
Early in his career, Michael Hund, MBA (SOM '18), realized the incredible impact that dedicated research could have on transforming lives, particularly those of children suffering from rare diseases. This passion led him to EB Research Partnership, where he now leads efforts to cure Epidermolysis Bullosa (EB), a debilitating rare genetic skin disorder. Michael’s journey began in the Flint Hills of Kansas, where he grew up on a cattle ranch. His experiences there instilled in him values like resilience, hard work, and community spirit, which have guided him throughout his career. He shared a quote from one of his personal heroes, Muhammad Ali: “Service to others is the rent you pay for your room here on earth.” This philosophy has driven Michael to use his talents to make a meaningful difference in the healthcare industry.
Grateful for Graham: A 4-year-old and his New Hartford family struggle with rare skin disorder5/18/2024
It’s known as “the worst disease you’ve never heard of,” and for 4-year-old Graham Robertello, it’s a painful way of life. Good thing he’s not tackling it alone. Robertello, of New Hartford, was born with Epidermolysis Bullosa (EB), a rare skin sensitivity disorder that can lead to tears, blisters and worse from even the most minor contact or friction. His parents, Carl and Amanda, have been with Graham every step of the way and have joined the fight to raise awareness and money for a possible cure. “Being rare, a lot of people don’t know about EB. At its core, it is a connective tissue disorder. It effects Graham’s skin, but it also affects him internally as well,” explained Amanda Robertello in a recent interview with the Daily Sentinel at their New Hartford home.
Two of West Seattle's most well known residents, Jill and Eddie Vedder came to Alki Beach on April 21 along with a large group of donors to Plunge for Elodie. The plunge was in support of research for treatments for Epidermolysis Bullosa, a genetic skin disorder.Individuals with EB lack critical proteins that bind the skin's two layers together. Without these proteins, the skin tears apart, blisters, and shears off, leading to severe pain, disfigurement, and internal and external wounds that may never heal. Plunges such as this now take place all over the world. To date they've raised 2.5 million dollars locally and this year alone they are at $450,000. The first Seattle plunge was last year but Jill said, "This is our first big year where we decided to really rally the troops and bring out our community to support us."
Dozens of people gathered at Alki Beach Sunday morning to "Plunge for Patterson," with the goal of raising awareness and money for a rare, genetic condition. Epidermolysis Bullosa, also known as "EB," causes fragile and blistering skin. "It makes me feel happy to see people supporting EB," said Patterson McKenzie, who was born with EB."You can get scraps anywhere at any time and we really want a cure for it." In his short life, McKenzie has benefited from the support of Jill and Eddie Vedder, a well-known West Seattle couple that co-founded the EB Research Partnership. In its almost decade of existence, EB Research Partnership has raised $60 million and counting. The money has helped lead to two FDA-approved treatments for EB. "It's a topical gene therapy that when Patterson gets a blister or open wound, they put it on at night and 24 hours later, that wound is healed," Jill Vedder said. "It's not a cure but it's such a huge massive achievement that just never existed before." Jill Vedder said seeing the community come together gives her hope that one day, soon, a cure for EB will become a reality.
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