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Board of Directors

The Executive board

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JIll Vedder

CO-FOUNDER AND CHAIRMAN
Jill Vedder is a founder and Chairman of EBRP. In her role as Chairman, 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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Heather Fullmer

CO-FOUNDER
Heather Fullmer is a founder of EBRP and manages EBRP’s grant process. She is a Wound Care RN and serves as a wound and ostomy consultant for a Southern California based hospital. She is the mother of an 11-year-old boy, Michael, who has severe generalized RDEB. Heather chairs Night of Discovery, an annual fundraising event in Southern California. Heather received a Bachelor’s of Science in Nursing from San Jose State University and is a Registered Nurse in California with extended wound care education from Emory University in Georgia.
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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

​​Eileen Attar
​Tracy Baldwin
​​​Chad Ceretto
​​Daniel Deshe


  
Faye Dilgen
Ric Firth
​​Corey Gray
Jennifer Kauf


Emily Kubik
Greg Licholai​
​Rob Veres
​​


Alex Silver - Chair Emeritus

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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