ALBERT EINSTEIN COLLEGE OF MEDICINE - Key Persons
Job Titles:
- Chief of the Bioethics Consultation Service at Montefiore Medical Center
Adira Hulkower is chief of the Bioethics Consultation Service at Montefiore Medical Center and assistant professor of epidemiology and population health at the Albert Einstein College of Medicine. In addition to bioethics consultation, Prof. Hulkower teaches bioethics to the medical students and medical residents. Prof. Hulkower's research interests include ethical issues in safe discharge planning, narrative ethics, and advance care planning. Prior to joining the Center for Bioethics Prof. Hulkower was a trial and appellate attorney for the Legal Aid Society, where she represented children in abuse, neglect and juvenile delinquency cases. She received her JD from the Benjamin N Cardozo school of law and her Masters in Bioethics from Columbia University.
Job Titles:
- Academic Director
- Director, Clinical Research Training Program
Job Titles:
- Professor of Clinical Pediatrics and Professor of Clinical Epidemiology and Population Health
Alan Fleischman has published and lectured extensively in many areas of perinatal medicine and has been a pioneer in the field of bioethics and research ethics, emphasizing the rights of individual patients and the responsibilities of health care professionals and organizations. His positions have included, for Albert Einstein College of Medicine and the Montefiore Medical Center Professor of Pediatrics and of Epidemiology and Social Medicine, Director of the Division of Neonatology in the Department of Pediatrics. He became Senior Vice President and Medical Director of the March of Dimes Foundation where he developed multiple clinical and research initiatives to prevent preterm birth, infant mortality and birth defects. Dr. Fleischman has been a consultant to the National Institute of Health, Environmental Protection Agency, Food and Drug Administration and Center for Disease Control and Prevention. He is an elected Fellow and a member of the Board of Directors of the Hastings Center and an elected Fellow of the New York Academy of Medicine. He was also a founding member of the New York State Governor's Task Force on Life and the Law (Bioethics Commission) and served for 27 years.
As far back as she can remember, Aliza has always enjoyed working with newborns and children. From wanting to care for her younger family members as a little girl, to spending her free time during high school caring for the two newborns of a close friend, Aliza has always felt passionate about newborn care. Aliza has nearly fifteen years' experience working in pediatric pulmonary care, newborn audiology screening in the well-baby and neonatal intensive care units, and as a recruiter for our previous newborn screening pilot study for lysosomal storage disorders. At ScreenPlus, Aliza continues to pursue her passion for newborn health as the Senior Clinical Interviewer/Research Coordinator for the Weiler Hospital site, where she educates and engages parents about ScreenPlus and newborn screening and provides insight to improve our recruitment strategies.
Job Titles:
- Chief Operating Officer of the National Gaucher Foundation
Amy Blum is Chief Operating Officer of the National Gaucher Foundation (NGF). Since 1991, she has devoted her career to focusing on disability advocacy, nonprofit development, and management.
In 1996, she founded and built a nonprofit, independent school in Maryland for students with diverse learning needs. Ms. Blum served as the organization's president and executive director for more than a decade.
Job Titles:
- Manager / Recreation Center
Ms. Rossetti is a senior biopharmaceutical executive who brings more than 20 years of industry experience. As of March 28, 2022, she was elected to the board of Aethlon Medical Inc. a medical technology company focused on developing products to diagnose and treat life and organ threatening diseases. She has served as a strategic consultant to Kala Pharmaceuticals, Inc. since October 2021, and prior to this was a consultant to Celgene Corporation. From June 2015 through July 2017, Ms. Rossetti held the position of Executive Vice President of Cell Machines, Inc., an early-stage biopharmaceutical company developing novel protein therapies where she assisted with the commercialization of technology for hemophilia and other diseases. Ms. Rossetti has held a number of positions within pharmaceutical commercial development, marketing, communications and finance, including Vice President of a Global Commercial Medicine Team at Pfizer Inc., where she led a global smoking cessation campaign. Shje is also a charter member of the Biopharmaceutical lndustry Bioethics Forum, initiated by Eli Lily in 2016. Ms. Rossetti currently holds positions as an adjunct Assistant Professor of Medical and Pharmaceutical Ethics at New York Medical College and an Adjunct Associate at Albert Einstein College of Medicine.
Ms. Rossetti graduated from Einstein-Cardozo Bioethics Program with an M.S. in Bioethics. She received an M.B.A. from Columbia University Graduate School of Business and a B.A. in Biology and English from the University of Pennsylvania.
Job Titles:
- Appointed Associate Dean for Postdoctoral Affairs
Job Titles:
- Clinical Research Coordinator at Mount Sinai West
Anneke Fleming is the Clinical Research Coordinator at Mount Sinai West. Anneke works with patients in both English and Spanish and hopes to improve access to NBS information for Spanish-speaking patients. She recently graduated with a BS from the University of Puget Sound, where she studied Molecular & Cellular Biology and conducted research in a plant genetics laboratory under Professor Bryan Thines. During college, she also studied health equity and international health systems while abroad in Mexico, Vietnam, and South Africa. Before moving to New York, she worked as the front office manager at a primary care office in the San Juan Islands.
Job Titles:
- Academic Director
- Senior Director, Institutional Research, Assessment, and Reporting
Job Titles:
- Employee Resources HR Policies and Procedures Career Opportunities Work and Holiday Schedule Information HR News Getting Around Campus
Dr. O'Neill completed her medical education at West Virginia University School of Medicine and Pediatric Residency at the University of South Carolina. She has worked in private practice and academic settings. The O'Neills founded Cure Sanfilippo Foundation after their daughter's diagnosis in 2013 and have spread awareness about Sanfilippo syndrome around the world. As Chief Science Officer, O'Neill leads the Foundation's patient-focused research efforts. She collaborates with other non-profit groups on advocacy and research, as well as oversees funding of scientific programs. Her uniquely-paired career and life experiences enable her to bridge gaps between scientists, clinicians, industry, and families, helping foster patient-centered research and translational paths for rare disease treatments.
Responsible for administration of benefits for all members of the College community.
Carolyn P. Neuhaus, Ph.D. is a Research Scholar at The Hastings Center. She explores philosophical and ethical questions that arise throughout biomedical research and medical practice, from the philosophical foundations of the use of animals in biomedical research to the development of digital medicine and use of AI in healthcare. Prior to joining The Hastings Center, she was Rudin Postdoctoral Fellow in the Division of Medical Ethics of NYU School of Medicine, and received her PhD in Philosophy at The Graduate Center, CUNY.
Job Titles:
- Director of Employee Relations
Christine Waggoner and her husband Douglas Dooley founded the Cure GM1 Foundation in April 2015 in honor of their daughter Iris and all those affected by GM1 Gangliosidosis. Christine graduated from Brown University where she studied Visual Art and Computer Science. The combination of studies in art and technology served as a basis for her career in computer graphics and 3D feature film animation. Founding and running Cure GM1 is a true labor of love to help bring a treatment to all those affected by GM1 Gangliosidosis.
Job Titles:
- Assistant Secretary
- Member of the Officers Team
Job Titles:
- Ara Parseghian Medical Research Fund ( APMRF )
Ms. Parseghian, along with her husband Michael, is the cofounder of the Ara Parseghian Medical Research Foundation. The Foundation was formed in 1994 in an effort to find a cure for Niemann-Pick Type C disease, which claimed the lives of 3 of their 4 children.
In 2016, the Foundation was merged with a Fund at Notre Dame. Ms. Parseghian has dedicated her life to raising more than $50 million in 26 years for the critical NP-C research. Of the more than 400 rare disease organizations in America, the APMRF has raised more funds than perhaps any other.
Dana Lee - Chief Legal Officer
Job Titles:
- Administrative Director
- Senior Counsel
Job Titles:
- Chairman, Board of Trustees, Montefiore Medicine
Danielle Spencer is the author of Metagnosis: Revelatory Narratives of Health and Identity (Oxford University Press, 2020) and co-author of Perkins-Prize-winning The Principles and Practice of Narrative Medicine (OUP, 2017). Academic Director of the Columbia University Master of Science in Narrative Medicine Program, her scholarly and creative work appears in diverse outlets, from The Lancet to Ploughshares. Spencer's scholarly interests include narrative ethics as well as speculative fiction and bioethics. Formerly artist/musician David Byrne's Art Director, Spencer holds a B.A. from Yale University, an M.S. in Narrative Medicine from Columbia University, and a Ph.D. from Johannes Gutenberg University Mainz. She is a 2019 MacDowell Fellow and 2020 Yaddo Fellow. www.daniellespencer.com
Job Titles:
- Co - Founder & President of MLD Foundation
Dean Suhr is the co-founder & President of MLD Foundation, which has been serving the MLD community for over 20 years. Dean got involved in Newborn screening around 2010 and has attended a majority of the ACHDNC advisory committee meetings since then. In 2016 he provided the RUSP-alignment language tying California's condition review timeline to the federal RUSP (SB 1095). In 2015 Dean launched the RUSP Roundtable (not MLD-specific) as a forum to bring together key perspectives from the NBS, public health, research, clinical care, biopharma, advocacy, payor, regulatory, and other ecosystems to address current and future opportunities to improve the system. MLD Foundation has been leading the effort to develop the MLD assay and work toward state and international implementation.
Job Titles:
- Professor of Laboratory Medicine, Medical Genetics
Dietrich Matern, M.D., Ph.D., is a Professor of Laboratory Medicine, Medical Genetics and Pediatrics, and co-director of the Biochemical Genetics Laboratory at the Mayo Clinic in Rochester, MN. His research activities involve the development and improvement of laboratory assays for screening, diagnosis and follow-up of patients with inborn errors of metabolism. He co-/authored more than 180 peer-reviewed papers and textbook chapters. Dr. Matern currently serves on ACMG's Board of Directors, is a member of the MN State Advisory Committee on Heritable and Congenital Disorders, the CAP/ACMG Biochemical & Molecular Genetics Resource Committee, and several other working groups.
Job Titles:
- Vice President and Director of Neonatal Services
Dr. Annemarie Stroustrup is a Vice President and Director of Neonatal Services as well as the System Chief of Neonatology for Northwell Health, based at Cohen Children's Medical Center. She is also Professor in the Departments of Pediatrics and Occupational Medicine, Epidemiology and Prevention at the Zucker School of Medicine at Hofstra/Northwell. Dr. Stroustrup received her undergraduate degree in Molecular Biology, minoring in both Biological Engineering and French Language and Culture, from Princeton University. She then worked in drug development for Sunesis Pharmaceuticals before pursuing medical training at Harvard Medical School followed by pediatric residency and Neonatal-Perinatal Medicine fellowship at the Mount Sinai Hospital. Dr. Stroustrup also earned her Master in Public Health degree at the Icahn School of Medicine at Mount Sinai. In addition to serving as an attending neonatologist, Dr. Stroustrup leads a research program exploring the impact of hospital-based environmental exposures on multi-system adverse outcomes related to prematurity. She has also been involved in a number of studies investigating genomic diagnostics in neonatal populations, including the NCATS-funded GEMINI collaborative and now the ScreenPlus program.
Job Titles:
- Director of the New York Newborn Screening Molecular
Dr. Colleen Stevens is the director of the New York Newborn Screening Molecular laboratory. She received a Ph.D. in Biomedical Sciences/Molecular Genetics from the State University of New York at Albany School of Public Health in 2004. She has been involved in clinical laboratory testing and regulatory oversight for 30 years. Dr. Stevens joined the Newborn Screening program in 2010 and has overseen the development and validation of new molecular tests including Sanger sequencing for Pompe disease and MPS I, SMN1 and SMN2 copy number analysis for SMA, and next generation sequencing for cystic fibrosis and SCID.
Dr. Daniel Ory, MD, trained at Harvard and MIT before joining the faculty at Washington University in 1995. Over the next two decades, his lab studied Niemann-Pick C (NPC) disease, developing new treatments and discovering disease biomarkers. Clinical assays based on these biomarkers have been implemented worldwide and are the basis of the newborn screening assay incorporated into ScreenPlus. Dr. Ory has authored >150 publications and has been the recipient of numerous awards. In 2018 Dr. Ory left Washington University to join Casma Therapeutics, a biotech company focused on development of drugs that harnessing autophagy to treat disease.
Job Titles:
- Senior Investigator in the Intramural Research Program of the NICHD
Dr. Forbes D. Porter is a Senior Investigator in the Intramural Research Program of the NICHD at the NIH. He has served as the Clinical Director for NICHD since 2010. Dr. Porter earned his MD and PhD from Washington University in St. Louis and trained in Pediatrics and Clinical Genetics at St. Louis Children's Hospital. Dr. Porter formed his own basic and clinical research groups at the NIH starting in 1996. His group's goal is to combine both basic and clinical science to understand the pathological processes contributing to these disorders and to develop and test therapeutic interventions. Dr. Porter was elected to be a member of the Association of American Physicians this past year.
Job Titles:
- Professor of Clinical Pediatrics at SUNY Downstate
Dr. Gabriel S. Kupchik is a Professor of Clinical Pediatrics at SUNY Downstate and Director of the Division of Medical Genetics at Maimonides Infants Children's Hospital in Brooklyn, NY. He joined Maimonides in 1994. He completed his medical education at the Universidad de Buenos Aires in Argentina. He completed a residency in Pediatrics at North Shore University Hospital and fellowship in Clinical and Molecular Genetics at Mount Sinai School of Medicine. Dr. Kupchik is board-certified in Pediatrics, Clinical Genetics and Molecular Genetics. He has published over 65 peer reviewed articles and abstracts and has received numerous grants for his work. His affiliations include the American College of Medical Genetics, the American Board of Medical Genetics and the American Medical Association.
Dr. Jaya Ganesh is a Board Certified in Pediatrics, Clinical Genetics and Biochemical Genetics. She is a member of the Society of Inherited Metabolic Diseases. She joined the faculty of the Department Genetics and Genomic Sciences at the Icahn School of Medicine at Mount Sinai as Associate Professor in 2018 and is the Co -Director of the Lysosomal Program at Mount Sinai. Her clinical efforts have been focused on the diagnosis and management of inborn errors of metabolism including lysosomal diseases. Dr. Ganesh is involved in clinical research in developing new therapies for genetic diseases and serves as the site Primary Investigator for various clinical trials.
Job Titles:
- Deputy Director of the New York Newborn Screening Program
Dr. Joseph Orsini is the Deputy Director of the New York Newborn Screening Program and Director of the Lysosomal Storage Disease (LSD) and Adrenoleukodystrophy (ALD) screening laboratory. He received his Ph.D. in Analytical Chemistry in 1989 from the University of Vermont. Dr. Orsini has 36 publications related to newborn screening. His laboratory was the first to screen newborns for Krabbe disease and ALD and his lab has performed pilot screening for multiple other lysosomal storage disorders. He leads national efforts in QA/QC, and he co-led the development of the Clinical Laboratory and Standard's Institute guideline to screening for Pompe disease.
Job Titles:
- Chief of the Division of Hospital Medicine
Dr. Justin Hopkin is chief of the division of Hospital Medicine at the University of Rochester in upstate New York. He is also the board chair for the National Niemann-Pick Disease Foundation, the national patient advocacy and family support organization for the United States.
Job Titles:
- Chief of the Division of Pediatric Genetic Medicine
Dr. Melissa Wasserstein is the Chief of the Division of Pediatric Genetic Medicine at the Children's Hospital at Montefiore and Professor of Pediatrics and Genetics at the Albert Einstein College of Medicine. After graduating from Cornell University, Dr. Wasserstein received her medical degree from NYU School of Medicine, followed by a pediatrics residency and medical genetics fellowship at Mount Sinai. A board-certified biochemical geneticist and pediatrician, Dr. Wasserstein diagnoses and manages patients with rare inborn errors of metabolism. Her research activities focus on expanding and enhancing newborn screening to optimize the outcome of infants with rare disorders, implementing genomic diagnostics in diverse populations, and studying the natural history and treatment of acid sphingomyelinase deficiency. She is the Principal Investigator of ScreenPlus.
Job Titles:
- Professor of Clinical Genetics and Pediatrics at Stony Brook Children 's Hospital
Dr. Patricia Galvin-Parton is a Professor of Clinical Genetics and Pediatrics at Stony Brook Children's Hospital, Renaissance School of Medicine at Stony Brook University. She received her Medical Degree from New York Medical College. She completed her Pediatric Residency and Genetics Fellowship at Children's Hospital of Los Angeles. She is Board Certified in Clinical Genetics and Medical Biochemical Genetics by the American Board of Genetics and Genomics (ABMGG). She is a member of the Society for Inherited Metabolic Disorders (SIMD). At Stony Brook Pediatrics, she is Chief of Pediatric Genetics and Director of the Inherited Metabolic Disorders and Genetic Counseling Programs.
Job Titles:
- Assistant Professor of Pediatrics
Dr. Rishi Lumba is an Assistant Professor of Pediatrics and an Attending Physician in the Division of Neonatology at New York University Grossman School of Medicine. He completed his Pediatric residency and a Neonatal-Perinatal fellowship at New York University School of Medicine. He is active in clinical research, involving SARS-CoV-2 in newborns and children, therapeutic hypothermia and pulmonary hypertension.
Dr. Suhas Nafday is a Professor of Pediatrics at the Albert Einstein College of Medicine, NY. He also handles clinical, administrative responsibilities as the Director of Newborn services at Children's Hospital at Montefiore (CHAM)-Weiler and chairs the neonatal quality improvement and patient safety program at CHAM-Weiler. He continues to maintain an active clinical research focus, having authored, or co-authored, many peer-reviewed publications and authored multiple book chapters in prominent ‘Pediatrics' and ‘Neonatology' textbooks.
Job Titles:
- Professor of Law at Cardozo School of Law
Edward Stein is a Professor of Law at Cardozo School of Law in New York City and the Director of the Gertrud Mainzer Program in Family Law, Policy, and Bioethics. He holds a B.A. from Williams College, a J.D. from Yale Law School, and a Ph.D. in Philosophy from M.I.T. He has been a visiting professor at UCLA Law School and UC-Hastings School of Law and was the Maurice R. Greenberg Visiting Professor of Law at Yale Law School. Before arriving at Cardozo, he taught philosophy at Yale University, NYU, Williams College, and Mount Holyoke College. He also clerked for Judge Dolores Sloviter on the U.S. Court of Appeals for the Third Circuit.
Stein's research interests include legal and philosophical topics related to families, sexual orientation, bioethics, cognition, and science. He has written extensively on these and other legal, philosophical, and scientific topics and is the author of two books, The Mismeasure of Desire: The Science, Theory and Ethics of Sexual Orientation and Without Good Reason: The Rationality Debate in Philosophy and Cognitive Science, both published by Oxford University Press, and the editor of an anthology, The Forms of Desire: Sexual Orientation and the Social Constructionist Controversy, published by Routledge.
Dr. Chuang is an associate professor in the Department of Family and Social Medicine at Albert Einstein College of Medicine in the Bronx. She practices palliative medicine and provides bioethics consultation at Montefiore Medical Center. She earned an MD from New York University School of Medicine in 2005 and a MPH from Columbia Mailman School of Public Health in 2012. Dr. Chuang is a clinical researcher focusing on the relationship between clinician-patient-family communication at end of life and disparities in quality of end of life care. Dr. Chuang teaches a Research Ethics seminar which is a joint offering of the Einstein-Cardozo Master in Bioethics program and the Albert Einstein College of Medicine Clinical Research Training Program. She also teaches bioethics and epidemiology and population health at the Albert Einstein College of Medicine.
Dr. Gordon Tomaselli, an Einstein alumnus, returned to campus in July to assume his new role as the Marilyn and Stanley M. Katz Dean. Here, he discusses his priorities, his vision for the future and more.
Hannah McNeight earned her undergraduate degree in chemistry at SUNY University at Albany. She worked as an analytical chemist at a pharmaceutical company for two years before joining the New York State Newborn Screening Lab and the New York ScreenPlus team.
Job Titles:
- Chairman Emeritus
- Member of the Officers Team
- Secretary
Isabella Buitron is a graduate from New York University where she studied journalism on the pre-health track. She is the clinical research coordinator at Mount Sinai Hospital for ScreenPlus. Her role includes obtaining consent from mothers to enroll their newborns in the study. She previously volunteered in a lab at the University of Miami that focused on oral cancer research. Buitron has co-authored articles and wrote an undergraduate thesis on personalized medicine.
Job Titles:
- Executive Director & Founder of the Fabry Support & Information Group
Jack Johnson is the Executive Director & Founder of the Fabry Support & Information Group (FSIG). With the support of affected family members, FSIG was formed in 1996. After years in a volunteer role as President of the Board of Directors Jack stepped down from the board to take on the position of Executive Director. Jack is responsible for much of the strategic vision of FSIG along with overall day-to-day management. Coming from a family with a long history of Fabry disease involvement, providing support and advocacy for others in the Fabry community has always been a matter of great personal importance. His years of experience have contributed beneficial knowledge to the international Fabry community.
Job Titles:
- Assistant Manager / Recreation Center
Job Titles:
- Administrative Director
- Associate Vice President
- CFO
Job Titles:
- Administrative Director
- Senior Director, Environmental Health and Safety
Job Titles:
- Talent Acquisition Specialist
Responsible for providing the highest level of service to hiring managers, candidates, employees, recruiters, as well as vendors.
Job Titles:
- Professor of Pediatric Genetics and Metabolism at the UNC School of Medicine
Dr. Muenzer is a Professor of Pediatric Genetics and Metabolism at the UNC School of Medicine. He received both his MD and PhD from Case Western Reserve University, and completed his residency in pediatrics at University of Wisconsin-Madison and fellowship at National Institutes of Health in Pediatric Endocrine and Genetics. Dr. Muenzer is a pediatric geneticist and researcher, with special interest in congenital metabolic disorders such as Mucopolysaccharidoses (MPS). He conducts research on progressive brain disease in children with MPS II and works to develop new avenues of treatment in children with MPS including clinical trials to test new forms of intravenous enzyme replacement therapy as well as alternative therapies, such as gene therapy and intrathecal drug delivery devices.
Job Titles:
- Senior Vice President and Chief Philanthropy Officer
Job Titles:
- Senior Executive Director of Development
Job Titles:
- Assistant Manager / Fitness
Lauren Sydney Flicker teaches Death & Dying, Personhood, Reproductive Ethics and the Law, and Bioethics and Medical Humanities. Her scholarship focuses on reproductive ethics, ethical issues in end of life care, and ethics consultation. Prior to joining the Center for Bioethics, Professor Flicker was a fellow in the Cleveland Fellowship in Advanced Bioethics, a multi-institutional program administered by the Cleveland Clinic. In 2010, she was a postdoctoral fellow at the University of Pennsylvania Center for Bioethics and an adjunct professor at Earle Mack School of Law at Drexel University of Philadelphia. She formerly practiced law at Fried Frank Harris Shriver & Jacobson in New York.
Job Titles:
- Assistant Director, Compensation
Job Titles:
- Academic Director
- Director, Animal Institute
Lih Lih Squires, Benefits Associate 718.430.2567 - lih.squires@einsteinmed.edu Assists with the leave management programs including worker's compensation and FMLA as well as benefits administration and employee inquiries.
Job Titles:
- Associate Professor at Mount Sinai Icahn School of Medicine
Dr. Eiland is an Associate Professor at Mount Sinai Icahn School of Medicine and the Director of Newborn Medicine at Mount Sinai West. She received her undergraduate degree from Harvard College and her medical degree from Yale University School of Medicine. She completed her pediatric residency and a Neonatal-Perinatal fellowship at New York-Presbyterian Morgan Stanley Children's Hospital. The first 5 years of her career were spent developing and using a murine model to elucidate the effects of early life stress on the anatomy and function of the limbic system. Subsequent to this time she has focused on developing clinical practices to ameliorate NICU stress.
Job Titles:
- Professor, Department of Pathology / Professor, Department of Medicine ( Infectious Diseases ) Vice Chair for Academic Affairs and Research Department of Pathology
Dr. Louis Weiss, M.D., M.P.H., discusses a study on the prevalence of human toxocariasis and notes that clinicians can provide advice to patients to help them avoid infection. Dr. Weiss is professor of medicine and of pathology and co-director of Einstein's Global Health Center.
Louis Weiss, M.D., M.P.H., says travelers should research health risks and travel advisories before planning a vacation. Dr. Weiss is professor of medicine and of pathology and co-director of Einstein's Global Health Center.
Maria Kefalas studied economics at Wellesley College and earned her M.A. and Ph.D. in sociology from the University of Chicago. She worked at the Brookings Institution, held a post-doctoral fellowship at the University of Pennsylvania, and taught at Barnard College (Columbia University) before joining the faculty of Saint Joseph's University in Philadelphia. Kefalas is the author of numerous books and articles, and has received grants from the William T. Grant Foundation, the MacArthur Foundation, and the Department of Justice.
Megan Clarke studied psychology at Marist College and obtained her Master of Science in Child and Adolescent Mental Health Sciences at King's College London. She works as a study coordinator at Albert Einstein College of Medicine on two research studies: the Brain Gene Registry project and ScreenPlus, where her role lies within implementation of the project and as an interviewer with parents whose newborns received abnormal results in NBS. She has previous experience as a mediator at Hudson River Housing, a runaway house for youths, and as a social worker at Dutchess County Family Services, both roles that fueled her wish to work in the patient facing side of research.
Job Titles:
- Professor in the Depts. of Chemistry
Michael H. Gelb has been a Professor in the Depts. of Chemistry and Biochemistry at the Univ. of Washington since 1985. He works in the area of chemical biology and bioanalytical chemistry. Major breakthroughs in the group include the development of methods to properly analyze the action of enzymes on membrane surfaces, the discovery of protein prenylation (farnesylation and geranylgeranylation) in mammalian cells (together with John A. Glomset), the development of Isotope-Coded Affinity Tags (ICAT reagents) for proteomic applications (together with Ruedi Aebersold), and the development of worldwide newborn screening for lysosomal storage diseases.
Job Titles:
- Adjunct Professor of Pediatrics at Washington University School of Medicine
Dr. Watson is an Adjunct Professor of Pediatrics at Washington University School of Medicine and Executive Director of the American College of Medical Genetics and Genomics the ACMG Foundation for Genetic and Genomic Medicine. He received his MS in Medical Genetics and his PhD in Physiology & Biophysics from the University of Alabama at Birmingham. His postdoctoral training was in the Medical Genetics Training Program at Yale University School of Medicine. He served on the Board of Directors of the American College of Medical Genetics and chaired numerous ACMG Committees. He was co-chair of the NIH/DOE Task Force on Genetic Testing.He is project director of HRSA's National Coordinating Center for Regional Genetics and Newborn Screening Collaborative Groups and for the Newborn Screening Translational Research Network (NBSTRN) Coordinating Center. He is also a co-P.I. for the ClinGen Resource Project, an NIH/NHGRI funded project to clinically annotate genome variation.
Michele Caggana, Sc.D., FACMG received her doctorate from Harvard School of Public Health, completed post-doctoral work at Mt. Sinai School of Medicine and is boarded in clinical molecular genetics. At the Wadsworth Center, she is Deputy Director, Division of Genetics; Chief, Laboratory of Human Genetics, and Director, Newborn Screening Program. At APHL she chairs the Newborn Screening Committee, is a member of the Newborn Screening Technical assistance and Evaluation Program's Steering Committee and Molecular Subcommittee. She is a member of the National Advisory Child Health and Human Development Council. For NBSTRN she Co-Chairs the Pilot Implementation Workgroup and is a member of the Steering Committee.
Job Titles:
- Director of Compensation & HR Technology
Job Titles:
- Research Scientist for ScreenPlus
Job Titles:
- Batten Disease Support and Research
Ms. DeBoth received her B.S. in Family Studies at Ball State University in 2015. As Director of Family Support at BDSRA, Morgan is dedicated to assuring that all families affected by Batten Disease can access resources, expert clinicians, and other families in the most timely and friendly way possible. She develops multi-platform resources such as family conferences, bereavement support, and clinical referrals. She also develops advocacy resources for those families who wish to meet with their local, state, or federal representatives. She also manages the yearly scientific merit review process that helps determine funding for global research grants.
Job Titles:
- Academic Director
- Director, Medical Scientist Training Program
Nancy Dubler lectures internationally on a range of bioethics issues, most particularly bioethics mediation and human subjects research. She founded and directed the Bioethics Consultation Service at Montefiore Medical Center (1978-2008) as a support for analysis of difficult clinical cases presenting ethical issues in the health care setting; this service uses mediation as its primary intervention. She also founded and directed the Certificate Program in Bioethics and the Medical Humanities (1995 to 2008). She is the author of numerous articles and books on ethical issues in research with human subjects, termination of care, home care and long-term care, geriatrics, adolescent medicine, prison and jail health care, and AIDS. Her recent books are: Bioethics Mediation: A Guide to Shaping Shared Solutions, with Carol Liebman, Vanderbilt University Press (2011); Ethics for Health Care Organizations: Theory, Case Studies, and Tools, with Jeffrey Blustein and Linda Farber Post (2002); The Ethics and Regulation of Research with Human Subjects, with Coleman, Menikoff and Goldner (Lexis/Nexis, 2005); and Handbook for Health Care Ethics Committees, with Post and Blustein (Johns Hopkins University Press, Baltimore, 2007). She is currently Consultant for Ethics at the New York City Health and Hospitals Corporation, the nation's largest public hospital system.
Job Titles:
- Member of the Officers Team
- Treasurer
Job Titles:
- Chief of Security & Transportation
Job Titles:
- Program Manager and Research Administrator for the Division of Pediatric Genetic Medicine
Nicole is the Program Manager and Research Administrator for the Division of Pediatric Genetic Medicine at the Children's Hospital at Montefiore, the University Hospital for Albert Einstein College of Medicine. She works on development, implementation and management of clinical trials, drug trials and other clinical research studies in pediatric and adult genetics. She is the Project and Data Manager for two large NIH-funded studies, ScreenPlus and NYCKidSeq. She has a MPH in Environmental and Occupational Medicine from the Icahn School of Medicine at Mount Sinai and a BS in Human Biology from the University at Albany, SUNY.
Pam is a public health official in Texas where she serves as a Policy Advisor at Texas' Health and Human Services Commission and also at the Department of State Health Services (DSHS) as an appointed public member to the states' Newborn Screening Advisory Committee. Pam has assisted clients in a variety of roles in both the public and private sector during her 25+ year career. She is also a philanthropist and in 2016 became a rare disease parent and advocate. Inspired by their daughters' diagnosis with Niemann Pick Type C, Pam and Chris Andrews created the Firefly Fund, which is dedicated to creating a path for newborn screening for NPC. Pam is dedicated to ensuring that babies yet to be born with NPC don't endure the long and arduous diagnostic odyssey experienced by her daughter Belle.
Paola Nicolas, Ph.D, M.B.E, HEC-C, is Assistant Director for the Bioethics Education Programs at Montefiore Einstein Center for Bioethics. She is also assistant professor in the Biomedical Ethics & Humanities Program at New York Medical College, School of Medicine (NYMC). She holds a Ph.D. in philosophy from the University Paris I-Panthéon Sorbonne, a Certificate in bioethics from Columbia University and a M.B.E. from Montefiore-Einstein School of Medicine. Prior to NYMC, she was a clinical ethics fellow at Montefiore-Einstein Center for Bioethics and got accredited as a health care ethics consultant (HEC-C). She taught philosophical ethics and bioethics at University Paris I-Panthéon Sorbonne, Fordham University, New York University, City University of New York and Montefiore-Einstein School of Medicine. Her areas of research are clinical ethics, European bioethics & Feminist Bioethics. She is particularly dedicated to address healthcare disparities and increase awareness regarding diversity issues.
In addition, Paola Nicolas is a former student of the École Normale Supérieure (Paris-Ulm) and passed the "agrégation de philosophie" (the most competitive examination in philosophy in France).
Job Titles:
- Academic Director
- Director
- Director, Bioethics Program
Tia Powell is recognized for her work in ethics education, end of life care, organ transplantation, ethics consultation and ethics policy, especially regarding public health disasters. She has served on several Institute of Medicine workgroups related to disaster response and planning, including becoming co-author of its 2009 report on standards of care in disasters, and co-chair of its current study on access to antibiotics in case of anthrax attack. She was also co-author of the landmark 2007 Chest series of articles on disaster preparation, and has served on the 2010 CDC workgroup assessing pediatric implications of disaster policies. She was formerly the Executive Director of the New York State Task Force on Life and the Law, which functions as New York State's Governor-appointed bioethics commission. She founded the Ethics Consultation Service at Columbia Presbyterian in 1992, and has provided bioethics expertise to numerous groups, including the New York State Cardiac Advisory Committee, the Empire State Stem Cell Ethics Committee, and the federal Secretary's Advisory Committee for Human Research Protections (SACHRP). She is a Fellow of the American Psychiatric Association and of the New York Academy of Medicine. Dr. Powell is a member of the original faculty of the Certificate Program in Bioethics and the Medical Humanities, and has delighted in teaching bioethics for nearly twenty years.
Job Titles:
- Pilot Hospital Site Leads and Co - Investigators
Paul Levy, MD, is a clinical geneticist at the Children's Hospital at Montefiore Medical Center. He received his medical education in 1988 from Tulane University School of Medicine and completed his residency in Pediatrics at Montefiore Medical Center. In 1992, he went on to complete a fellowship in Genetics at Tulane Medical Center Hospital. He is an associate professor in the Department of Pediatrics and the Department of Pathology at the Albert Einstein College of Medicine. He is a member of the American Board of Pediatrics, and American Board of Medical Genetics and Genomics in Clinical Biochemical Genetics.
Job Titles:
- Academic Director
- Administrative Director
Job Titles:
- Administrative Director
- Senior Director, Business Services
Job Titles:
- Member of the Officers Team
- President & CEO, Montefiore Medicine
Job Titles:
- Academic Director
- Director, D. Samuel Gottesman Library
Job Titles:
- Vice President of Development
Job Titles:
- Einstein Benefactor and Board Member
Job Titles:
- Chairman Emeritus
- Member of the Officers Team
Robert J. Desnick, Ph.D., M.D., is a human geneticist and Dean for Genetics and Genomic Medicine, and Professor and Chairman Emeritus of the Department of Genetics & Genomic Sciences at the Icahn School of Medicine at Mount Sinai. Desnick is a past director of the American Board of Medical Genetics (ABMG), a Founding Diplomat of the American College of Medical Genetics (ACMG), and past chair of the Association of American Medical Colleges (AAMC). His expertise includes the inborn errors of metabolism, and has made major research and clinical contributions to the lysosomal storage diseases and the porphyrias. He has been continuously funded by the NIH for over 40 years. He earned a Ph.D. in genetics from the University of Minnesota Graduate School in 1970 and his M.D. from the University of Minnesota Medical School in 1971. He completed an internship and a residency in pediatrics at the University of Minnesota Hospitals. He is ABMG certified in clinical, biochemical, and molecular genetics.
Job Titles:
- Member of the Officers Team
- Chairman / Chair Emerita
Job Titles:
- Pilot Hospital: NYU Langone ( Manhattan )
Job Titles:
- Ara Parseghian Medical Research Fund ( APMRF )
- Director of the Ara Parseghian Medical Research Fund at the University of Notre Dame
Sean Kassen is the Director of the Ara Parseghian Medical Research Fund at the University of Notre Dame. In this role he is responsible for administering all of the functions of the Fund which includes advancing Niemann-Pick Type C (NPC) disease research, fundraising, managing the grants program, and raising awareness of NPC disease.
Sean has been intimately involved in these efforts to find a cure for NPC disease for the past 10 years. Prior to this new position, he was the Director of Academic Advancement for the College of Science at the University of Notre Dame.
Sean received his undergraduate degree in biochemistry from Alma College in Alma, MI and his Ph.D. in cell and molecular biology from the University of Notre Dame.
Job Titles:
- Employee Relations Specialist
Employee Relations The goal of the employee relations function is to develop and support a positive relationship between employees and Albert Einstein College of Medicine through programs, guidelines and policies that ensure fairness, respect and consistent treatment of all employees. Cassandra M. Jean-Baptiste, Director of Employee Relations 718.430.2551 - cassandra.jeanbaptiste@einsteinmed.edu The director of employee relations is responsible for the oversight and administration of employee policies and collective bargaining agreements and provides counsel, advice and support to departments and employees in maintaining departmental operations and effective employee relations. Sheri Robertson, Employee Relations Specialist 718.430.3771 - sheri.robertson@einsteinmed.edu The employee relations specialist works collaboratively with departments and employees to provide support in maintaining effective employee relations consistent with applicable laws, policies, procedures and collective bargaining agreements.
Job Titles:
- Center and Programs Manager
Stacy Govan specializes in finance, tax and grant administration as well as the management of clinical services and educational programs. She has been an Associate at H & R Block for several years and has worked at Lehman College's Office of Research and Sponsored Programs.
Job Titles:
- Administrative Director
- Vice President, Development
Job Titles:
- Research Coordinator at Hassenfeld Children 's Hospital
Sylvia is a Research Coordinator at Hassenfeld Children's Hospital at the NYU Langone Health site. Sylvia recruits and obtains consent from the legal guardians of newborns. She engages and connects herself with the families to provide information on what it means to participate in ScreenPlus. Sylvia has previous experience from The Tisch Cancer Institute at Mount Sinai Hospital, where she worked as a Clinical Research Coordinator on numerous genitourinary clinical trials. She obtained her Bachelor's degree from Hunter College, where she studied Human Biology and Psychology.
Job Titles:
- Assistant Director, Benefits
Responsible for administration of health and welfare programs including, Workers' Compensation and FMLA benefits.
Job Titles:
- President and CEO of the National MPS Society
Terri Klein is the President and CEO of the National MPS Society, a non-profit organization dedicated to acting as a support group for families affected by mucopolysaccharidoses (MPS), mucolipidoses (ML) and other related disorders. She has experience in major donor relationship building, operations, and a history of working in the non-profit industry. She received a Graduate Certificate in Nonprofit Management from North Carolina State University. She will be receiving her Masters of Public Administration (MPA) from North Carolina State University in December 2021. She received a Bachelors of Science in Human Resources Management from the Madonna University School of Business.
Responsible for recruitment activities for all research and skill trade roles, etc.
Job Titles:
- Talent Acquisition Specialist
Responsible for onboarding volunteers, student trainees and staff members.
Job Titles:
- Administrative Director
- Vice President of Human Resources
- Vice President, Human Resources & Title IX Coordinator