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Board of Directors

The Executive board

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JIll Vedder

CO-FOUNDER AND CHAIRWOMAN
Jill Vedder is a founder and Chairwoman of EBRP. In her role as Chairwoman, she oversees fundraising and serves as a senior adviser on strategic and programmatic direction. Her efforts are demonstrably accelerating progress towards treatment breakthroughs and ultimately a cure.
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Jill is a serial philanthropist who is also active with the Vitalogy Foundation. ​
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Eddie Vedder

CO-FOUNDER
Activist and front man of Pearl Jam, Eddie Vedder is a founder of EBRP and has taken up causes from health care to antitrust. Eddie’s connection to the Fullmers' son, Michael, inspires his work to improve the lives of individuals with EB and to aggressively fund research. Born in Evanston, Illinois, Vedder grew up mostly in Southern California. In his twenties, he played in several San Diego bands before his recruitment into the band that would become Pearl Jam.
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ARI DESHE, MA 

Ari Deshe is the founder and former chairman of Safe Auto Insurance Co.  He is also a past member of the Board of Directors of American Eagle Outfitters and Retail Ventures, Inc. Ari was born with EB Simplex, as were three of his children. Ari and his family, including his wife, Ann, and their children Elie, David, Dara and Daniel, together with spouses have decided to take an active role in making the mission to find a cure for EB a reality. ​ Ari received his BS and MA in Finance and Banking from the University of Alabama. ​

board of directors

Nathan Burmeister
​​Daniel Deshe
Faye Dilgen


  
​Ric Firth
Jennifer Kauf
​Emily Kubik
Greg Licholai​
Mathew Rosengart
​Michael Sacks
Marc Seidner
LEARN MORE ABOUT OUR FOUNDERS

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COPYRIGHT @2025 EB RESEARCH PARTNERSHIP. ALL RIGHTS RESERVED. EB RESEARCH PARTNERSHIP IS A 501(C)(3) NON PROFIT.

  • Epidermolysis Bullosa
    • What is EB?
    • Life with EB
    • Resources
  • Research
    • Our Impact
    • Scientific Advisory Board
    • Clinical Trials >
      • Filsuvez
      • Vyjuvek
      • ZEVASKYN
    • Town Halls
    • Apply for a Grant
  • Get Involved
    • Donate
    • Sponsor
    • EB Active
    • Events
    • The Effect
    • Shop
    • Give Cryptocurrency
    • Give Stocks
    • Give through Donor Advised Funds (DAF)
    • Accelerator Fund
  • Media
    • Matter of Time Film
    • Press
    • Videos
  • About Us
    • Our Mission
    • Financials
    • Venture Philanthropy
    • Supporter Spotlights
    • Leadership >
      • Board of Directors
      • Staff
  • Donate