Dr. Steven U. Walkley, DVM, PhD
Steven U. Walkley, DVM, PhD is Professor of Neuroscience, Pathology and Neurology and Director of the Rose F. Kennedy Intellectual and Developmental Disabilities Research Center at the Albert Einstein College of Medicine in New York.
Dr. Walkley is internationally known for his research on the pathogenesis and treatment of lysosomal diseases. As head of the Sidney Weisner Laboratory of Genetic Neurological Disease he pursues NIH- and private foundation-funded research on Niemann-Pick, Tay-Sachs, Batten and related disorders impacting the function of the lysosomal system. Of particular focus are disease-induced changes in endocytic, autophagic and salvage pathways and their impact on brain function. Dr. Walkley’s research has also been at the forefront of therapy development for these disorders, including pioneering studies in the use of bone marrow transplantation and substrate reduction therapies. His research led to the only currently approved therapy (by the EMA) for Niemann-Pick type C disease.
Dr. Walkley was co-founder of the Gordon Research Conference on Lysosomal Disease and is an active member of the scientific advisory boards of many lysosomal disease organizations. He is a founding member of the unique scientific research collaborative known as Support of Accelerated Research for NPC disease (SOAR-NPC).
Dr. Walkley received his undergraduate, DVM and PhD degrees at universities in his native state of Alabama (Auburn University and the University of Alabama in Birmingham). He also carried out pre- and post-graduate studies at Auckland University in New Zealand, the University of Edinburgh in Scotland and the Albert Einstein College of Medicine in New York. He joined the faculty of the Albert Einstein College of Medicine in 1982 and today is a tenured professor. He has published more than 100 research papers in leading scientific journals.
Dr. Melissa Wasserstein, M.D.
Melissa Wasserstein, M.D. is the Chief of the Division of Pediatric Genetic Medicine at the Children’s Hospital at Montefiore and an Associate Professor of Pediatric and Genetics at the Albert Einstein College of Medicine.
In addition to diagnosing and managing patients with inborn errors of metabolism, Dr. Wasserstein is a clinical investigator. Her research focuses on expanding newborn screening for rare inherited disorders and evaluating novel, ethical, legal and social implications of newborn screening. She is a Principal Investigator of NYCKidSeq, a multisite program studying the implementation of genomic medicine in underserved populations. She has been the Principal Investigator on numerous clinical trials evaluating novel therapeutics for rare genetic diseases.
Dr. Wasserstein is a Co-Director of the Newborn Screening Translational Research Network’s Steering Committee. She is on the Executive Committee of the Rose F. Kennedy Intellectual and Developmental Disabilities Research Center where she also serves as Associate Director of the Human Clinical Phenotyping Core. She is also on the Scientific Advisory Board of the International Niemann-Pick Disease Association.
Dr. Wasserstein received her B.S. in biology from Cornell University and her medical degree from New York University School of Medicine. She completed her pediatrics residency and medical genetics fellowship at the Mount Sinai School of Medicine, where she subsequently remained as a faculty member before moving to Einstein-Montefiore in 2016. She has published more than 70 articles and chapters in leading scientific journals.
Agnes C Jensen, MPH
Agnes Jensen joins the STAR Foundation after nearly two decades as a project manager and research study coordinator with the US Department of Veterans Affairs (VA). At the VA, she co-authored over a dozen peer reviewed papers and worked on projects focusing on chronic pain, serious mental illness, post-deployment health, and family caregiving.
Agnes is a Navy Veteran, with a Bachelor of Science from the US Naval Academy and a Masters of Public Health from the University of Minnesota. She continues to work with the VA as an engagement facilitator, bringing patient voices into study planning by connecting Veterans with research teams. At the STAR Foundation, she supports connecting the FSASD patient and family community with research opportunities via the Patient Contact Registry.
In her free time, Agnes enjoys reading, the beach, and spending time with family, friends, and her 2-year-old bichon, Fozzie.
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