B

Committee Biographical Sketches

Alan I. Leshner, Ph.D. (Chair), is chief executive officer of the American Association for the Advancement of Science (AAAS) and executive publisher of its journal, Science. Previously, Dr. Leshner served as director of the National Institute on Drug Abuse at the National Institutes of Health (NIH) and as deputy director and acting director of the National Institute of Mental Health. Before that, he held a variety of senior positions at the National Science Foundation. Dr. Leshner began his career at Bucknell University, where he was professor of psychology. Dr. Leshner is an elected member of the Institute of Medicine (IOM) of the National Academies of Science and a fellow of AAAS, the National Academy of Public Administration, and the American Academy of Arts and Sciences. He was appointed by President George W. Bush to the National Science Board and reappointed by President Obama. He received an A.B. in psychology from Franklin and Marshall College and his M.S. and Ph.D. in physiological psychology from Rutgers University. Dr. Leshner has been awarded six honorary doctor of science degrees.

Sharon F. Terry, M.A. (Vice-Chair), is president and chief executive officer of the Genetic Alliance, a network of more than 10,000 organizations, of which 1,200 are disease advocacy organizations. Genetic Alliance aims to improve health through the authentic engagement of communities and individuals. It also works to develop innovative solutions through novel partnerships, connecting consumers to smart services. Ms. Terry is also the founding chief executive officer of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). As codiscoverer of the gene associated



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B Committee Biographical Sketches Alan I. Leshner, Ph.D. (Chair), is chief executive officer of the Ameri- can Association for the Advancement of Science (AAAS) and executive publisher of its journal, Science. Previously, Dr. Leshner served as direc- tor of the National Institute on Drug Abuse at the National Institutes of Health (NIH) and as deputy director and acting director of the National Institute of Mental Health. Before that, he held a variety of senior posi- tions at the National Science Foundation. Dr. Leshner began his career at Bucknell University, where he was professor of psychology. Dr. Leshner is an elected member of the Institute of Medicine (IOM) of the National Academies of Science and a fellow of AAAS, the National Academy of Public Administration, and the American Academy of Arts and Sciences. He was appointed by President George W. Bush to the National Science Board and reappointed by President Obama. He received an A.B. in psy- chology from Franklin and Marshall College and his M.S. and Ph.D. in physiological psychology from Rutgers University. Dr. Leshner has been awarded six honorary doctor of science degrees. Sharon F. Terry, M.A. (Vice-Chair), is president and chief executive officer of the Genetic Alliance, a network of more than 10,000 organiza- tions, of which 1,200 are disease advocacy organizations. Genetic Alli- ance aims to improve health through the authentic engagement of communities and individuals. It also works to develop innovative solu- tions through novel partnerships, connecting consumers to smart ser- vices. Ms. Terry is also the founding chief executive officer of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). As codiscoverer of the gene associated 159

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160 THE CTSA PROGRAM AT NIH with PXE, she holds the patent for ABCC6 and has assigned her rights to the foundation. She developed a diagnostic test and conducts clinical tri- als. Ms. Terry is also a cofounder of the Genetic Alliance Registry and Biobank. She is the author of more than 90 peer-reviewed articles. In her focus on consumer participation in genetics research, services, and poli- cy, she serves in a leadership role on many of the major international and national organizations, including the IOM’s Board on Health Sciences Policy, the IOM Roundtable on Translating Genomic-Based Research for Health, the board of the National Coalition for Health Professional Edu- cation in Genetics, the International Rare Disease Research Consortium Interim Executive Committee, and the newly formed Invoke Health! She is on the editorial boards of several journals and was instrumental in the passage of the Genetic Information Nondiscrimination Act. Among her awards are an honorary doctorate from Iona College in 2005 for her work in community engagement, the first Patient Service Award from the Uni- versity of North Carolina’s Institute for Pharmacogenomics and Individu- alized Therapy in 2007, the Research!America Distinguished Organization Advocacy Award in 2009, and the Clinical Research Forum and Founda- tion’s Annual Award for Leadership in Public Advocacy in 2011. She is currently an Ashoka Fellow. Susan Axelrod is chair and founder of Citizens United for Research in Epilepsy (CURE). In 1998 Ms. Axelrod and other mothers joined forces to raise funds to invest in the search for a cure for epilepsy. She has brought national and international media exposure to epilepsy, appearing on television news programs as well as special featured segments. Both Parade and Newsweek magazine articles have featured Ms. Axelrod and her family’s journey with epilepsy. Ms. Axelrod has received numerous awards and honors for her leadership from Research!America, the Child Neurology Foundation, and the American Epilepsy Society, among oth- ers. She has spoken and served as a panelist at international conferences focused on medical philanthropy and advances and has served on the NIH’s National Advisory Neurological Disorders and Stroke Council and as a reviewer for the Medical Research Program within the Department of Defense. Ms. Axelrod received a master’s degree in business admin- istration from the University of Chicago. Enriqueta C. Bond, Ph.D., served from 1994 to 2008 as the first full- time president of the Burroughs Wellcome Fund (BWF), a private, inde- pendent foundation dedicated to advancing the medical sciences by sup-

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APPENDIX B 161 porting research and other scientific and educational activities. During her presidency Dr. Bond guided BWF in its transition from a corporate to a private foundation. Prior to joining the BWF, Dr. Bond served as the executive officer for the IOM. In 1997 she was elected as a member of the IOM. In 2004 she was elected as a fellow to the AAAS for her distin- guished contributions to the study and analysis of policy for the ad- vancement of the health sciences. Dr. Bond is chairman of the National Research Council’s Board on African Science Academy Development and a member of the Forum on Microbial Threats. She is a past member of the National Academies’ Report Review Committee as well as numer- ous other study committees. Dr. Bond is the recipient of numerous hon- ors, including the 2008 Order of the Long Leaf Pine award from the state of North Carolina. The highest honor the governor can bestow on a citi- zen, this award was given to Dr. Bond for her efforts to improve science education for the children of North Carolina. She has also received the IOM Walsh McDermott Medal in recognition of distinguished service to the National Academies and received the National Academy of Sciences Professional Staff Award. She received her bachelor’s degree from Wellesley College, her M.A. from the University of Virginia, and her Ph.D. in molecular biology and biochemical genetics from Georgetown University. Ann C. Bonham, Ph.D., is chief scientific officer of the Association of American Medical Colleges and directs an array of programs supporting all aspects of research and research training. She serves on the IOM Fo- rum on Drug Discovery, Development, and Translation and on the De- partment of Veterans Affairs National Research Advisory Council. Dr. Bonham was awarded the 2012 Distinguished Alumni Award for Achievement from the University of Iowa Carver School of Medicine and was the 2010 recipient of the Society for Executive Leadership in Academic Medicine International Award for Excellence. Prior to joining the association, Dr. Bonham served as executive associate dean for aca- demic affairs and professor of pharmacology and internal medicine at the University of California (UC), Davis, School of Medicine. Dr. Bonham, a member of the UC Davis faculty for almost 20 years, played a major role in UC Davis’s expansion of translational sciences and the School of Medicine’s emphasis on combining research, education, and mentoring as interwoven and inseparable missions. As executive associate dean, Dr. Bonham oversaw the School of Medicine’s research, undergraduate med- ical education, and faculty academic programs. She previously served as

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162 THE CTSA PROGRAM AT NIH chair of the Department of Pharmacology. She also served as vice-chair of research for the Department of Internal Medicine and chief of the Di- vision of Cardiovascular Medicine. She was twice awarded the UC Davis Kaiser Award for Excellence in Teaching Science Basic to Medicine and was honored with the American Medical Women’s Association Gender Equity Award for providing a gender-fair environment for the education and training of women physicians. She has been recognized for her role in initiating training opportunities, mentoring fellows and students who have accepted positions in academics and industry, bringing together investigators to work in teams toward common goals, and fostering col- laborations with faculty and department chairs across disciplines. Susan J. Curry, Ph.D., is dean of the University of Iowa College of Public Health. She is recognized internationally for expertise in behav- ioral science and translation of research findings into health policy. Her extensive research on tobacco includes studies of motivations to quit smoking, randomized trials of promising smoking cessation and preven- tion interventions, evaluations of the use and cost-effectiveness of tobac- co cessation treatments under different health insurance plans, and health care costs and utilization associated with tobacco cessation. Dr. Curry’s research also encompasses studies of dietary change, modification of risky drinking patterns, and methods of increasing compliance with rec- ommended cancer screening. She has served as a principal investigator or coinvestigator on 30 grants funded by the NIH, the Centers for Dis- ease Control and Prevention, and major foundations. Dr. Curry has served on numerous national advisory boards, including the National Cancer Policy Board of the IOM, the Tobacco Cessation Consortium of the American Academy of Pediatrics, and the Subcommittee on Cessa- tion of the Interagency Committee on Smoking and Health. She currently serves on the board of directors for the American Legacy Foundation and is a member of the U.S. Preventive Services Task Force. She received her Ph.D. in psychology from the University of New Hampshire. In 2010 Dr. Curry was elected a member of the IOM. Phyllis A. Dennery, M.D., FAAP, is professor of pediatrics at the Uni- versity of Pennsylvania and the Werner and Gertrude Henle Chair in Pe- diatrics at the Children’s Hospital of Philadelphia. She serves as the chief of the Division of Neonatology and Newborn Services at the Children’s Hospital of Philadelphia and the University of Pennsylvania Health Sys- tem, where she oversees more than 280 intensive-care beds as well as

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APPENDIX B 163 more than 80 practitioners and 18 trainees. Dr. Dennery is the recipient of many awards and honors, including the Andrew Mellon Fellowship, the Ross Young Investigator Award from the Western Society of Pediat- rics, the Alfred Stengel Health System Champion Award from the Uni- versity of Pennsylvania, an honorary doctorate of science from Ursinus College, and the Mentor of the Year Award from the Eastern Society for Pediatric Research, among others. She has been listed as a “Top Doctor” in U.S. News & World Report and in Philadelphia Magazine. Dr. Dennery is also an active member of many professional and scientific societies. She served as the president of the Society for Pediatric Re- search and is currently the president of the International Pediatric Re- search Foundation. In addition to being the author of more than 100 publications, Dr. Dennery is associate editor for Free Radicals in Biology and Medicine and Pediatrics and a grant reviewer for the NIH. Her area of basic science research is the regulation of lung gene expression in oxi- dative stress, in particular the role of heme oxygenase, the rate-limiting enzyme in bilirubin production. Her clinical interests are in neonatal jaun- dice, bronchopulmonary dysplasia, and the long-term consequences of prematurity. Ralph I. Horwitz, M.D., MACP, is senior vice-president for clinical evaluation sciences at GlaxoSmithKline (GSK) and Harold H. Hines Jr. Professor Emeritus of Medicine and Epidemiology at Yale University. Dr. Horwitz trained in internal medicine at institutions (Royal Victoria Hospital of McGill University and the Massachusetts General Hospital) where science and clinical medicine were strongly connected. These ex- periences as a resident stimulated a deep interest in clinical research training, which Dr. Horwitz pursued as a fellow in the Robert Wood Johnson Clinical Scholars Program at Yale under the direction of Alvan R. Feinstein. He joined the Yale faculty in 1978 and remained there for 25 years as codirector of the Clinical Scholars Program and later as chair of the Department of Medicine. Before joining GSK, Dr. Horwitz was chair of medicine at Stanford University and dean of Case Western Re- serve Medical School. He is an elected member of the IOM of the Na- tional Academy of Sciences; the American Society for Clinical Investigation; the American Epidemiological Society; and the Associa- tion of American Physicians (he was president in 2010). He was a mem- ber of the Advisory Committee to the NIH director, under both Elias Zerhouni and Francis Collins. Dr. Horwitz served on the American

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164 THE CTSA PROGRAM AT NIH Board of Internal Medicine and was chairman in 2003. He is a master of the American College of Physicians. Jeffrey P. Kahn, Ph.D., M.P.H., is the inaugural Robert Henry Levi and Ryda Hecht Levi Professor of Bioethics and Public Policy at the Johns Hopkins Berman Institute of Bioethics and is professor in the Depart- ment of Health Policy and Management in the Johns Hopkins University Bloomberg School of Public Health. Prior to joining the faculty at Johns Hopkins in 2011, Dr. Kahn was director of the Center for Bioethics and the Maas Family Endowed Chair in Bioethics at the University of Min- nesota, positions he held from 1996 to 2011. Earlier in his career, Dr. Kahn was director of the graduate program in bioethics and assistant pro- fessor of bioethics at the Medical College of Wisconsin (1992–1996), and from April 1994 to October 1995 he was associate director of the White House Advisory Committee on Human Radiation Experiments. Dr. Kahn works in a variety of areas of bioethics, exploring the intersec- tion of ethics and public health policy, including research ethics, ethics and genetics, and ethical issues in public health. He has served on nu- merous state and federal advisory panels and speaks nationally and inter- nationally on a range of bioethics topics. He has published more than 125 articles in the bioethics and medical literature and is a coeditor of the widely used text Contemporary Issues in Bioethics, now in its eighth edi- tion. From 1998 to 2002 he wrote the biweekly column “Ethics Matters” for CNN.com. Dr. Kahn earned his B.A. in microbiology from UC Los Angeles, his M.P.H. from Johns Hopkins University, and his Ph.D. in philosophy/bioethics from Georgetown University. Robin T. Kelley, Ph.D., M.S.W., is evaluation manager at the National AIDS Minority Council. Dr. Kelley received a doctorate in public and community health from the University of Maryland and a master’s de- gree in social work from Columbia University. She has recently received a Fulbright Senior Specialist Award to train faculty who teach front-line health care workers in Zanzibar. She has worked for more than 18 years as a program and evaluation consultant, behavioral scientist, program developer, program director, and evaluator for community-based health organizations focused on vulnerable populations in the United States and abroad. Dr. Kelley has taught women’s health and human rights at Georgetown University and women’s health at George Washington Uni- versity and at the Washington Center for Internships and Academic Seminars.

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APPENDIX B 165 Margaret McCabe, Ph.D., R.N., P.N.P., is the director of nursing re- search for medicine patient services at Boston Children’s Hospital. In this role she educates and mentors staff in the conduct of evidence-based practice (EBP) and clinical research. At the same time Dr. McCabe maintains her own program of research that focuses on using a biobehavioral framework to better understand the symptom of fatigue in children. Dr. McCabe holds a faculty appointment at Harvard Medical School and has taught undergraduate and graduate nursing courses at several schools of nursing. Her teaching most often focuses on the basic elements of research design for clinical inquiry emphasizing the process of developing clinically relevant and feasible research questions. She completed post-doctoral training at the Harvard School of Public Health and Yale School of Nursing. Dr. McCabe is a past-president and found- ing member of the International Association for Clinical Research Nurs- es. Through the course of her nursing career Dr. McCabe has worked in roles providing direct patient care, managing care units for patients par- ticipating in research protocols and developing and implementing clinical research protocols. Dr. McCabe has been involved in research activities taking place in a range of settings from the laboratory to the community. Edith A. Perez, M.D., is the deputy director-at-large for the Mayo Clinic Cancer Center in Florida, group vice-chair of the Alliance for Clinical Trials in Oncology, director of the Breast Program, and the Serene M. and Frances C. Durling Professor of Medicine at Mayo Medical School. She is a cancer specialist and an internationally known translational re- searcher at the Mayo Clinic. Her roles extend nationally, including posi- tions within Mayo Clinic, the American Association for Cancer Research, the American Society of Clinical Oncology, and the National Cancer Institute. Dr. Perez has developed, and is involved in, a wide range of clinical trials exploring the use of new therapeutic agents for the treatment and prevention of breast cancer. She leads and has helped de- velop basic research studies to evaluate the role of genetic markers in the development and aggressiveness of breast cancer. She has written more than 550 research articles and abstracts in journals and books. Dr. Perez is frequently invited to lecture at national and international meetings and serves on the editorial boards of multiple academic journals. A select list of awards Dr. Perez has received includes the Breast Cancer Research Foundation Research Grant Award (1998–2013); Horizon Achievement Award in Cancer Research (2002); Mayo Clinic Outstanding Faculty

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166 THE CTSA PROGRAM AT NIH Award (2002 and 2004); North Florida Hispanic of the Year Award (2003); Mayo Clinic Distinguished Educator Award (2003); Honorary Doctorate of Letters, University of North Florida (2006); Mayo Clinic Distinguished Investigator (2007); Florida State Biomedical Research Advisory Council (BRAC) (2009–2012); Alpha Omega Alpha Honor Medical Society (2009); Mayo Clinic Outstanding Course Director (2009); EVE Award for Lifetime Achievement (2011); NFL Hispanic Heritage Leadership Award (2011); and 1 of the 75 Most Influential People in Jacksonville HealthCare from Jacksonville’s 904 Magazine (2012). Clifford J. Rosen, M.D., is senior scientist at Maine Medical Center’s Research Institute. He is the former director of the Maine Center for Os- teoporosis Research and Education, an affiliate of St. Joseph Hospital and a center that he started more than 20 years ago. He previously con- ducted more than 20 NIH- and pharmaceutical-sponsored clinical re- search trials, as well as currently overseeing three investigator-initiated, NIH-funded translational projects and one program project. He is past president of the American Society of Bone and Mineral Research (2002– 2003) and served 5 years as the first editor-in-chief of the Journal of Clinical Densitometry as well as associate editor of the Journal of Bone and Mineral Research and the Journal of Clinical Endocrinology and Metabolism. Dr. Rosen is currently the editor-in-chief of The Primer on the Metabolic Bone Diseases and Disorders of Mineral Metabolism and previously served a 4-year term on the advisory council for the National Institute of Arthritis and Musculoskeletal and Skin Diseases and a 10- year term on the FDA’s Endocrinologic and Metabolic Drugs Advisory Committee. He is also a member of several professional societies, includ- ing the Endocrine Society, the American Society of Bone and Mineral Research, and the American Federation of Clinical Research. Dr. Rosen is a professor of medicine at Tufts University School of Medicine and currently studies the role of insulin-like growth factors, bone marrow adiposity, and stem cells in skeletal remodeling. His work includes more than 325 manuscripts in a variety of journals, including Nature Medicine, the New England Journal of Medicine, and the Proceedings of the Na- tional Academy of Sciences of the United States of America. Dr. Rosen received his medical degree from the State University of New York, Syracuse.