debra of America is a leading U.S. nonprofit working to improve the lives of people impacted by Epidermolysis Bullosa (EB). Our team brings together direct support for individuals and families with EB, education, advocacy, research funding, and close partnership with treatment developers. Behind every one of those efforts is a small group of people who care deeply about the EB Community.
Executive Director
Senior Development Director
EB Nurse Educator
Community Engagement Director
Programs Director
Supporter Led Events Director
Special Events Director
Finance Director
Digital Marketing Director
Programs Manager
Bookkeeper
Arlene Pessar founded debra of America in 1980 alongside her son, Eric Lopez, who was born with EB. Frustrated by how little was known about the disease, the mother-and-son team wrote the first EB informational materials, built a national network to share them, and helped bring about the first National EB Awareness Week in 1984. Arlene passed away in 2023, and we carry her mission forward every day.
John Maslowski, Chair, Philadelphia, PA
Robert Ryan, Ph.D., Vice Chair, Isle of Palms, SC
J Alec Alexander, Treasurer, Gainesville, GA
Leslie Rader, Secretary, Louisville, KY
Ryan Fullmer, Chair Emeritus, Klamath Falls, OR
Amit Bhattacharyya, Seattle, WA
Angela Christiano, Ph.D., New York, NY
Tiffany Clinton, Los Angeles, CA
William Cornman, Sewickley, PA
Richard Gallagher, Gurnee, IL
John Lee, San Francisco, CA
Rob Rayl, Atlanta, GA
Chris Sloey, Thousand Oaks, CA
Andrew Tavani, Atlanta, GA
Thomas Trimarchi, Ph.D., New York, NY
James Wetrich, Dallas, TX
Brett Kopelan, M.A., Executive Director, Boulder, CO
Alan Arbuckle, M.D., Kaiser Permanente
Eugene A. Bauer, M.D., Stanford University School of Medicine
Susan Bayliss, M.D., Washington University School of Medicine
Gary Bellus, M.D., University of Colorado at Denver and Health Sciences Center
Anna L Bruckner, M.D., University of Colorado at Denver and Health Sciences Center
Angela Christiano, Ph.D. (Co-chair), Columbia University
Richard A.F. Clark, M.D., SUNY Stonybrook
Jonathan Alden Dyer, M.D., University of Missouri Health Care
Ervin Epstein, Jr., M.D., Children’s Hospital Oakland Research Institute
Nancy B. Esterly, M.D., Medical College of Wisconsin
Jo-David Fine, M.D., Vanderbilt University
Elaine V. Fuchs, Ph.D., Rockefeller University
Sharon Glick, M.D., SUNY Downstate Medical Center
Paul Honig, M.D., Children’s Hospital of Philadelphia (CHOP)
Gerald S. Lazarus, M.D., Johns Hopkins University
Moise L. Levy, M.D., Baylor College of Medicine and Texas Children’s Hospital
Anne W. Lucky, M.D., Cincinnati Children’s Hospital Medical Center
Joseph McGuire, M.D., Stanford University School of Medicine
Laurence Miller, M.D., Potomac, MD
Kimberly D. Morel, M.D., New York-Presbyterian Hospital
Amy Paller, M.D., Children’s Memorial Hospital, Chicago
Francis Palisson, M.D., La Universidad del Desarrollo, Chile
Neil S. Prose, M.D., Duke University Medical Center
Elena Pope, M.D., Hospital for Sick Children, Toronto
Juliette Prendiville, M.D., University of British Columbia
Dennis R. Roop, Ph.D., Baylor College of Medicine
Lawrence Schachner, M.D., University of Miami School of Medicine
Tor Shwayder, M.D., Henry Ford Hospital
Daniel Siegel, M.D., Dermatologic Surgery Institute & President, American Academy of Dermatology
Mary K. Spraker, M.D., Emory University Clinic of Woodruff Medical Center
Madeline Weiner, RN, Chapel Hill, NC
Timothy Wright, D.D.S., University of North Carolina at Chapel Hill
