ICYMI: Jill and Eddie Vedder Raised Millions to Support EB Research Partnership

 

In 2010, Eddie Vedder (well known for his musical career in Pearl Jam) co-founded the EB Research Partnership (EBRP) alongside wife Jill and a group of parents whose children have a rare genetic disorder called epidermolysis bullosa. Since then, the EBRP has raised more than $50 million to fund research and identify treatments (or potential cures) for epidermolysis bullosa; the nonprofit’s work helped to fund the first FDA-approved EB therapy. 

Most recently, the EB Research Partnership announced via news release that the nonprofit had hosted its Venture Into Cures Summit; at the same time, Eddie Veder held two powerful and intimate shows at Benaroya Hall in October 2023 to raise funds and awareness. 

The Summit

EBRP held its Venture Into Cures Summit from October 22-24, 2023. Nearly 5,000 people attended. The Summit began with panels, speeches, and presentations from people such as Nicholas Christakis, MD, PhD, MPH and Dan Sheeran, the Director of Health Care & Life Sciences at Amazon Web Services (AWS). Later that night, families, physicians, and other stakeholders came together at the Venture Into Cures Dinner—viewing art, participating in karaoke, and listening to comedy. 

Eddie Vedder’s Shows 

Vedder then performed over two nights. He shared a heartwarming tribute to Eli Meyer, a boy living with EB, by playing “Say Hi,” a song inspired by Meyer himself. In between “I Won’t Back Down” and “Elderly Woman Behind the Counter in a Small Town,” and many other hits, Vedder shared stories of those affected by epidermolysis bullosa, provided educational information, and spoke about catalyzing a world where we have developed a cure for EB. 

Altogether, the Vedders and EBRP raised more than $5 million to put towards EB research. But the fight is not done. More research and fundraising is needed to help people with EB. If you are interested in donating, or learning more about the cause, you may do so here

What is Epidermolysis Bullosa (EB)? 

Epidermolysis bullosa refers to a family of rare genetic connective tissue disorders that cause moderate-to-severe skin blistering with any friction. There are four main forms of epidermolysis bullosa with different manifestations: 

Dystrophic Epidermolysis Bullosa (DEB)

  • Abnormal or absent nails
  • Generalized blistering (that may appear more on the hands, feet, elbows, and knees in certain subtypes)
  • Mucous membrane involvement
  • Corneal abrasions
  • Scarring and milia (tiny white bumps)

Epidermolysis Bullosa Simplex (EBS)

  • Blistering that is often localized to the hands and feet
  • Thickened calluses on the palms/soles
  • Rough, thickened fingernails and toenails 
  • Oral blistering in infancy

Junctional Epidermolysis Bullosa (JEB)

  • Large ulcerative blisters that can become life-threatening
  • Thin-appearing skin
  • Oral cavity involvement/blistering
  • Irregular pitting on tooth surfaces
  • Malnutrition and dehydration
  • Electrolyte imbalance
  • Sepsis

Kindler Syndrome

This is an extremely rare form of EB and may present with: 

  • Extremely fragile skin
  • Widespread blistering that tends to affect the extremities
  • Thickened skin on the palms and soles
  • Increased risk of squamous cell carcinoma
  • Fused fingers and toes
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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