Board of Directors

The Executive board

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.

Jill is a serial philanthropist who is also active with the Vitalogy Foundation.

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.

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.