EB RESEARCH - Key Persons
Job Titles:
- Member of the Board of Directors
Job Titles:
- Member of the Scientific Advisory Board
- Chairman of Department of Dermatology at Duke University School of Medicine
- Professor of Medical Genetics
Alain Hovnanian, M.D., Ph.D. is a Professor of Medical Genetics and Director of an INSERM Department at Necker Enfants Malades Hospital in Paris, France. His laboratory is a founding member of the Imagine Institute, a translational research center dedicated to improving the lives of families with rare disease. Dr. Hovnanian has completed extensive research on genetics of orphan diseases, with a focus on EB.
Job Titles:
- CHAIRMAN
- CO - FOUNDER
- Member of the Executive Board
- Founder and Chairman of EBRP
Alexander Silver is a founder and Chairman of EBRP. He is a founding partner at P2 Capital Partners, a private investment firm based in New York City. Prior to starting P2, Alex held positions at Soros Fund Management, Karsch Capital Management and Lazard Freres.
Alex serves on the NAIMS Advisory Council of the National Institutes of Health. Alex has a 10-year-old son, Jackson, with RDEB, and daughters Michaela and Charley.
Job Titles:
- Member of the Scientific Advisory Board
Amy Paller, M.D. is a Department of Dermatology Chair as well as a Director at the Northwestern University Skin Disease Research Center (SDRC) and the Director of Pediatric Dermatology Clinical Research and has led over 80 clinical trials. She is a member of the EBCRC and treats an estimated 75+ EB patients per year. She attended Medical School at Stanford University and completed her residency at Northwestern University.
Job Titles:
- Member of the Scientific Advisory Board
- Scientific Advisory Board Chair
Anne Lucky, M.D., Scientific Advisory Board Chair, is the medical director at the Epidermolysis Bullosa Center at Cincinnati Children's Hospital in Cincinnati, Ohio and has a private practice. Dr. Lucky provides interdisciplinary care for over 300 EB patients and consults both nationally and internationally on cases involving EB. She helped develop the EBSEQ Next Generation genetic screening test for EB in July of 2014 at Cincinnati Children's Hospital. She attended medical school and completed her residency at Yale University School of Medicine.
Job Titles:
- Founder and Former Chairman of Safe Auto Insurance Co
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 their spouses have decided to take an active role in making the mission to find a cure for EB a reality.
Job Titles:
- Member of the Scientific Advisory Board
- Senior Scientist at Amgen Inc
- Senior Scientist at Amgen Inc. Working in Drug Product Technologies
Christopher Sloey is a Senior Scientist at Amgen Inc. working in the department of Drug Product Technologies. He specializes in the development of protein therapeutics. He has been published multiple times and has several patents related to pharmaceutical formulations. He has a degree in Biochemistry from the University of California Los Angeles.
Craig Fox is a highly qualified, technically competent and knowledgeable accounting professional. Craig started his career in the financial services industry working in various senior accounting, finance, marketing, and strategic planning and analysis positions at Fidelity Investments, Charles Schwab, and Wells Fargo. After working for a number of industry leaders in the financial services industry Craig started and ran a successful accounting and financial services consulting business in the San Francisco Bay Area for 20 years with a focus on the nonprofit sector.
Job Titles:
- Member of the Board of Directors
Job Titles:
- CO - FOUNDER
- Founder of EBRP
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.
Job Titles:
- Founding Partner of Bernstein
Edward Grossmann is a founding partner of Bernstein, Litowitz, Berger & Grossmann, one of the leading securities litigation law firms worldwide. He is the Chairman of the Board of Trustees of the Kaplen JCC on the Palisades. He is also past President of the Kaplen JCC on the Palisades and is a past trustee of the UJA Federation of Northern New Jersey. Edward received his Bachelor's Degree from the University of Wisconsin and his Juris Doctorate from the University of Michigan Law School.
Job Titles:
- Member of the Board of Directors
Job Titles:
- Member of the Board of Directors
Job Titles:
- Member of the Scientific Advisory Board
- Head of the Barsh Lab at the Hudson Alpha Institute for Biotechnology
Greg Barsh, M.D., Ph.D. runs the Barsh Lab at the Hudson Alpha Institute for Biotechnology in Huntsville, AL. The Barsh lab studies the genetic mechanisms of morphologic variation, and looks for new insights on basic biology and human disease. He has a M.D. and Ph.D. in pathology from the University of Washington, Seattle.
Suephy Chen M.D., M.S. is the Chair of the Department of Dermatology at Duke University School of Medicine. She attended medical school at Johns Hopkins University School of Medicine.
Job Titles:
- CO - FOUNDER
- Founder of EBRP
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.
Job Titles:
- CO - FOUNDER
- Founder of EBRP
Jamie Silver is a founder of EBRP. Jamie chairs ACTion for Jackson, a fundraising event in NYC that raises upwards of $1,000,000 for EB research annually. She has appeared on the Today Show and in the Huffington Post advocating for children with EB and their families. Jamie has a son, Jackson, with RDEB and two daughters, Michaela and Charley. Jamie received a bachelor's degree from Columbia University and a master's degree in special education from Bank Street College of Education.
Job Titles:
- Member of the Board of Directors
Job Titles:
- Member of the Board of Directors
Job Titles:
- Member of the Board of Directors
Job Titles:
- CO - FOUNDER
- VICE CHAIRMAN
- Founder and Vice Chairman of EBRP
Jill Vedder is a founder and Vice Chairman of EBRP. In her role as Vice 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.
Job Titles:
- Member of the Board of Directors
Job Titles:
- Member of the Board of Directors
Job Titles:
- Member of the Board of Directors
Job Titles:
- Member of the Board of Directors
Job Titles:
- Member of the Board of Directors
Job Titles:
- CHIEF EXECUTIVE OFFICER
- EBRP As the CEO
Michael joined EBRP as the CEO in 2017. Michael previously served as the Director of Development for the Multiple Myeloma Research Foundation, leading their successful $100 million Curing Cancer Now campaign driving achievement of the largest longitudinal genomic dataset in cancer, an end-to-end Precision Medicine Model, a 25 member consortium of leading academic medical centers, 10 approved treatments in just over a decade, and the tripling of patient life expectancy. Previously, Michael spent over a decade in leadership at the actor and philanthropist Paul Newman's Hole in the Wall Gang Fund, working on behalf of children and their families battling cancer and other life-threatening illness.
Michael received his Master's in Business Administration (MBA) from Yale University, CORe credential from Harvard Business School, and an undergraduate degree in Philosophy from the University of Kansas. Michael has spent his career dedicated to transforming healthcare and also sits on the boards of numerous non-profit organizations. He lives in Connecticut with his wife Sarah and four daughters.
Job Titles:
- Member of the Board of Directors
Job Titles:
- Chief Executive Officer of Johns Lyng Group
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.
Job Titles:
- Managing Director at Silver Lake Partners
Stephen Evans is a Managing Director at Silver Lake Partners. Prior to joining Silver Lake, he was a Principal at Cognetas, a European mid-market private equity firm. Previously, Stephen spent five years at Bain & Company. In his time at Bain & Company, he advised clients in Europe and the US across a variety of industries and also spent two years in Bain's Private Equity group. Stephen holds an M.A and an M.Phil from Cambridge University, and an M.B.A from Harvard Business School.
Job Titles:
- Member of the Board of Directors
Job Titles:
- Member of the Board of Directors