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Joy Oladokun

Joy Oladokun Covers Eddie Vedder's Matter of Time in Honor of the EB Community

WATCH HERE:
DONATE IN HONOR OF JOY
The remarkable, powerful Joy Oladokun covers Eddie Vedder's Matter of Time to honor the EB Community for the 2022 Venture into Cures digital show aimed at raising funds for critical, life-saving research and awareness for Epidermolysis Bullosa (EB).

We’re so thankful for Joy Oladokun for helping us raise $6M over the last 3 years of Venture into Cures to fund research and accelerate treatments and cures for EB. Estimated to affect 500,000 around the world, EB is a group of rare, life-threatening skin diseases marked by fragile skin that easily breaks and blisters. The skin is so fragile that even gentle rubbing or accidental pressure can cause it to tear. For this reason, children with EB are sometimes called “butterfly” children, because their skin is as fragile as a butterfly’s wings.
 
EBRP was co-founded by a group of parents dedicated to savings their kids’ lives, along with Jill and Eddie Vedder, and is the largest global organization supporting research for EB. Since its foundation, EBRP has raised $50M, funded more than 120 projects, and increased clinical research for EB by nearly 20 times, including four Phase 3 clinical trials.


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  • Epidermolysis Bullosa
    • What is EB?
    • Life with EB
    • Resources
  • Research
    • Our Impact
    • Scientific Advisory Board
    • Clinical Trials
    • Community Council
    • Apply for a Grant
  • Get Involved
    • Donate
    • Sponsor
    • EB Active
    • Events >
      • Venture Into Cures
    • The Effect
    • Shop
    • Accelerator Fund
  • Media
    • Press
    • Videos
  • About Us
    • Our Mission
    • Financials
    • Venture Philanthropy
    • Supporter Spotlight
    • Leadership >
      • Board of Directors
      • Staff
      • Founders
  • Donate