Our Scientific & Medical Advisory Board


Susan J. Hayflick, M.D.
Susan J. Hayflick, M.D.Professor & Chair
Molecular & Medical Genetics
Professor, Pediatrics and Neurology
Oregon Health & Science University
Portland, Oregon

Susan Hayflick is a medical doctor and professor as well as Chairman of the Department of Molecular & Medical Genetics at the Oregon Health & Science University in Portland. She also is a professor of pediatrics and neurology.

Dr. Hayflick has been studying NBIA since 1991. Her lab, working with the labs of collaborators discovered the NBIA genes, PANK2, PLA2G6, FA2H, and WDR45. Her research is focused on gaining sufficient understanding of the NBIA disease process to enable the development and testing of new therapies.

The Hayflick lab has received research support from the NBIA Disorders Association, the NIH (NEI, NINDS & NICHD), the Association Internationale de Dystrophie Neuro Axonale Infantile, the Associazione Italiana Sindromi Neurodegenerativi da Accumulo di Ferro, the European Commission, as well as from numerous families from around the world. Hayflick has authored numerous articles about NBIA. She also provides clinical consultation to families and physicians around the world who are caring for people with NBIA.


Penny Hogarth, M.D.Penny Hogarth, M.D.
Associate Professor of Neurology and Molecular & Medical Genetics
Oregon Health & Science University
Portland, Oregon

Penelope Hogarth, MD, is a neurologist and associate professor at Oregon Health & Science University. She completed medical school and residency training at the University of Colorado. After completing a fellowship in movement disorders and clinical research trial design at the University of Rochester in New York, she relocated to Portland, Oregon. In addition to studying NBIA and PKAN, her research interests extend to Huntington’s disease, Parkinson’s disease, and dystonia. Dr. Hogarth follows adult patients undergoing deep brain stimulation and is an investigator in national studies of Parkinson’s disease and other movement disorders.

Suzanne Jackowski, Ph.D.Suzanne Jackowski, Ph.D.
Department of Infectious Diseases
St. Jude Children's Research Hospital
Memphis, TN

Suzanne Jackowski is a biomedical scientist and faculty member at St. Jude Children's Research Hospital in Memphis.

Jackowski is a leader in two areas of metabolic research: the cellular control of coenzyme A levels and the regulation of membrane phospholipid synthesis. She has experience in several biological systems ranging from bacteria to mammals. Most recently, she has looked into the physiological consequences of coenzyme A deficiency and the development of potential therapeutics for PKAN, the most common form of NBIA.

She has authored more than 166 scientific articles and is a member of several review groups and editorial boards. She was executive editor of BBA-Molecular and Cell Biology of Lipids from 2011 to 2015.

Jackowski's research has been funded by the National Institutes of Health, the American Heart Association, the Muscular Dystrophy Association, the American Cancer Society, Retrophin Inc., CoA Therapeutics, Inc., and ALSAC, the fundraising and awareness organization for St. Jude.

She earned a doctorate in biomedical science from the University of Tennessee - Oak Ridge National Laboratory and was a postdoctoral fellow at the University of Connecticut Health Center and the University of Illinois, Champaign-Urbana.

Paul T. Kotzbauer, M.D., Ph.D.Paul T. Kotzbauer, M.D., Ph.D.
Associate Professor, Dept. of Neurology
Washington University School of Medicine
St. Louis, Missouri

Paul T. Kotzbauer, MD, PhD, is an assistant professor in the Department of Neurology at Washington University School of Medicine in St. Louis, Missouri, where he completed medical school and earned his doctorate in neuroscience. He received further training in neurology and movement disorders at the University of Pennsylvania. Kotzbauer sees patients in the Movement Disorders Center at Washington University, and his research focuses on Parkinson’s disease and NBIA.

Arnold W. Strauss, M.D.Arnold W. Strauss, M.D.
Cincinnati Children’s Hospital Medical Center
Cincinnati, OH

Dr. Arnold Strauss, a researcher and professor of pediatrics in cardiology at the Cincinnati Children’s Hospital Medical Center and the University of Cincinnati has deep expertise in pediatric cardiology as well as an award-winning background in researching genetic disorders that affect fatty acid metabolism and the heart’s performance. Strauss also is associate director for external relations and strategic projects with the Cincinnati Children's Research Foundation.

He has received awards for his research, including the Basic Research Prize from the American Heart Association in 2006. He has published more than 240 research and journal articles, in addition to serving as a research mentor to more than 60 graduate students and post-doctoral fellows.

Strauss received a bachelor’s degree in philosophy from Stanford University and completed his medical degree at Washington University in St. Louis. He held faculty leadership posts there and at Vanderbilt University before coming to Cincinnati in 2007.

Amy Sun MD, PhD, MBA, FACPAmy Sun MD, PhD, MBA, FACP
Luye Pharmaceuticals, Inc.
Princeton, NJ 08540

Dr. Sun, a Fellow of the American College of Physicians, is Board certified in Internal Medicine with specialty training in Endocrinology and Clinical Pharmacology, and with a Ph.D. in Molecular Pharmacology. Dr. Sun has extensive experience in managing both early and later phase global clinical trials across therapeutic areas, including endocrinology, oncology, women’s health care and cardiovascular diseases. She has contributed to five NDAs/ BLA, numerous INDs, and global regulatory submissions, which lead to the market authorization of a number of therapeutic agents including the first marketed immono-oncology anti PD1 drug, pembrolizumab.

Dr. Sun is VP, Head of Global Clinical Development at Luye Pharma in Princeton, New Jersey. Prior to that she was a senior medical director at Sanofi.

Dr. Sun graduated from SouthEast University Medical School in China, completed her medical residency at Creighton University, and endocrinology fellowship Institutes of Health. She obtained her PhD from Creighton University, and MBA from Lehigh University.




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