Board of Directors

The Executive board

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.

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.

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.

ARI DESHE

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.

Scott Didier

Scott Didier AM is the Chief Executive Officer of Johns Lyng Group. Prior, he formed one of Australia’s leading commercial flooring companies, Trump Flooring. Scott has applied his business acumen to the philanthropic sector, founding the Starlight Foundation's prestigious Star Ball in 1998. Since then, under Scott’s guidance as Chairman, the event has become the Starlight Foundation’s biggest income generator, raising over $1.5 million each year. Recently, Scott co-founded the EB Research Foundation of Australia, a partner of EBRP, which shares the mission of finding a cure for Epidermolysis Bullosa. In recognition of his tireless philanthropic work, Scott was awarded Member of the Order of Australia in 2016.