BOARD OF TRUSTEES

Faith Daniels, President

Warren T. Buhle, Esq., Vice-President
Charlee Miller, Treasurer
Richard Gallagher, Jr., Secretary
Alan Shalita, M.D., Chairman SAB

Kathleen Brown
Angela Christiano, Ph.D.
Gregg Cuvin
Tom Gillespie
Jeanne Humphrey
Frank Kacmarsky Dystrophic Epidermolysis Bullosa Research Association of America, Inc.
Brett Kopelan
Robert Meirowitz, M.D.
Laurence Miller, M.D.
Thomas Misisco
Paul Nunnari
Leslie Rader
Daniel Siegel, M.D.
nd
Alexander J. Silver February 2 , 2009
Jouni Uitto, M.D., Ph.D.
Timothy Wiebe
Sonya Wilander

SCIENTIFIC ADVISORY BOARD

Alan Shalita, M.D. (Chair)
SUNY Health Science Center
Alan Arbuckle, MD
University of Colorado at Denver Health Sciences Center To Whom This Letter May Come:
Richard G. Azizkhan, M.D.
Cincinnati Children's Hospital Medical Center
Eugene Bauer, M.D.
Stanford University School of Medicine
Debra of America is delighted to support the work of Dr. Maria Limardo and her
Susan Bayliss, M.D.
Washington University School of Medicine
colleague Javier Mitchell for the documentary project, “Butterfly Children: The
Gary Bellus, MD, Ph.D. Chronicles of EB”.
The Children’s Hospital, Denver
Anna L. Bruckner, M.D.
Lucille Packard Children’s Hospital at Stanford
Angela Christiano, Ph.D.
As the only national non-profit in the United States that supports sufferers
Columbia University
Richard A.F. Clark, M.D.
Epidermolysis Bullosa, we see the effects EB has on families – the constant care –
SUNY Stony Brook bathing and bandaging in order to protect the skin from further blistering and to avoid
Elizabeth Connelly, M.D.
University of Miami School of Medicine infection. Beyond the lengthy and very painful daily wound care, the family is faced
Jonathon Alden Dyer, M.D.
University of Missouri Health Care
with multiple additional medical issues: inability to eat “normal foods due to
Ervin Epstein, Jr., M.D.
Children's Hospital Oakland Research Institute
“esophageal scarring”, Tracheotomies, GI-tube insertion, failure to thrive, clubbing of
Nancy B. Esterly, M.D. hands and feet, abnormal moth and dental issues. The list is endless. With each crisis
comes the fear of losing the child, the ongoing disallowances and negotiations with
Medical College of Wisconsin
Jo-David Fine, M.D., M.P.H.
Vanderbilt University
Elaine V. Fuchs, Ph.D.
insurance carriers. For the uninsured, the picture is even bleaker, as most institutions
Rockefeller University will not take Medicare patients with EB.
Sharon Glick, M.D.
SUNY Downstate Medical Center
Paul Honig, M.D.
Children's Hospital of Philadelphia Debra provides support through its Wound Care Clearing House, full-time Nurse
Gerald S. Lazarus, M.D.
Johns Hopkins University
Educator, and New Family Advocate program. We also fund peer-reviewed research
Moise L. Levy, M.D. toward a cure.
Baylor College of Medicine
Anne W. Lucky, M.D.
Cincinnati Children's Hospital Medical Center
Joseph McGuire, M.D. We desperately need this documentary. Awareness is a critical issue if we are going
Stanford University School of Medicine
Laurence Miller, M.D.
to cure this awful disease. I cannot imagine a finer, more knowledgeable professional
Potomac, Maryland to lead this effort than Dr. Maria Limardo. Debra of America, its Board of Trustees and
Kimberly D. Morel, M.D.
New York-Presbyterian Hospital the EB Community support this very important endeavor. Please do not hesitate to
Amy Paller, M.D.
Children's Memorial Hospital Chicago contact me if we can be helpful, or if you need additional information.
Francis Palisson, M.D.
La Universidad del Desarrollo, Chile
Ellen Pfendner, Ph.D. Sincerely,
GeneDx
Elena Pope, M.D .
Hospital for Sick Children, Toronto
Neil S. Prose, M.D.
Duke University Medical Center
Juliette Prendiville, M.D.
Mary Sprague
University of British Columbia Executive Director
Dennis Roop, Ph.D.
Baylor College of Medicine msprague@debra.org
Laurence Schachner, M.D.
University of Miami School of Medicine
Tor Shwayder, M.D.
Henry Ford Hospital
Daniel Siegel, M.D.
SUNY Downstate Medical Center
Mary Spraker, M.D.
Emory University
Jouni Uitto, M.D., PhD.
Thomas Jefferson University
Madeline Weiner, R.N.
Chapel Hill, NC
Timothy Wright, D.D.S.
University of North Carolina at Chapel Hill

EXECUTIVE DIRECTOR
Mary Sprague
16 East 41st Street, 3rd Floor ♦New York, NY 10017 ♦(p) 212.868.1573 ♦ (f) 212-868-9296 ♦www.debra.org
FOUNDER
Arlene Pessar, R.N.