BOARD MEMBERS

OF THE

GENESIS PROJECT

Stephan Züchner, M.D., Ph.D.

CEO, The Genesis Project

Dr. Stephan Züchner is co-founder and CEO of The Genesis Project foundation. He has early recognized the need and has built a genomic data information system for real-time sharing of genome level data. This GEM.app system was the basis for creating the GENESIS software within ViaGenetics Inc, a company cofounded by Dr. Züchner. The Genesis Project holds a license of the GENESIS software platform to make it available to and adjust it for the needs to the academic community for scientific research.

 

Dr. Züchner is a Professor and the Chairman of the Dr. John T. Macdonald Foundation Department of Human Genetics, and Co-Director of the John P. Hussman Institute for Human Genomics at the Miller school of Medicine, University of Miami. A former professor of genetics at Duke University, Dr. Züchner helped to establish the world-class genetics department at the University of Miami. He is a trained neurologist and molecular geneticist with research interests in identifying genetic variation associated with disease.

His lab has identified dozens of genes for Mendelian neurodegenerative disorders and also evaluated risk factors for complex genetic conditions, including Alzheimer’s disease, Parkinson’s disease, and obsessive-compulsive disorder. His team is amongst the pioneering groups that have promoted genome sequencing methods for disease gene identification in humans, mice, and drosophilia.

Rosario Isasi, JD, MPH

Ethics and Policy Director, The Genesis Project

Rosario Isasi is a Research Assistant Professor at the Dr. John T. Macdonald Foundation Department of Human Genetics at the University of Miami Miller School of Medicine. She holds multiple appointments, including at the Institute for Bioethics and Health Policy, within which she serves as Director of their Genetics, Ethics, and Policy Program, as well as the John P. Hussman Institute for Human Genomics and the Interdisciplinary Stem Cell Institute.  Prof. Isasi’s research is devoted to identifying and analyzing the social, ethical and policy dimensions of novel and disruptive genomic technologies. 

 

She has particular expertise in the area of international comparative law and bioethics. Her work has contributed to the development of policy for governmental, professional and international bodies. She holds many leadership roles in major international initiatives. Prof.  Isasi was recently named the President’s International Fellow of the Chinese Academy of Sciences (CAS). She also serves as the Ethics/Policy Advisor of the European Commission’s European Human Pluripotent Stem Cell Registry (hPSCREG), is a member of the Ethics Advisory Board of the “Vanderbilt-Miami-Meharry Center of Excellence in Precision Medicine and Population Health” and the American Society for Human Genetics (ASHG) Task Force on “Gene Editing”. Prof. Isasi chairs the International Stem Cell Forum Ethics (ISCF) Working Party, a consortium of funding agencies for regenerative medicine.

Rebecca Schule, M.D.

Clinical Director, The Genesis Project

Dr. Rebecca Schüle is a neurologist and neurogeneticist with extensive experience in the clinical and genetic characterization of rare hereditary movement disorders. She is a Research Group Leader for Genomics of Rare Diseases at the Center of Neurology and Hertie Institute for Clinical Brain Research, Tübingen, Germany. She has developed and validated the first clinical rating scale to measure disease severity and progression in Hereditary Spastic Paraplegias and published a standardized clinical assessment for this group of diseases.

 

She has participated and/or coordinated a number of national and international network initiatives on clinics and genetics of Hereditary Spastic Paraplegias (GeNeMove / funding Federal Ministry of Education and Research Germany; EuroSPA / funding European Union E-Rare; HSP – network of the German Center for Neurodegenerative Diseases in the Helmholtz Association), all of which have adopted her standardized clinical assessment protocol and clinical database.

 

Dr. Schüle is a leading expert on the genetics of Hereditary Spastic Paraplegias and Ataxias and has contributed several new genes to this growing field. Dr. Schüle has been substantially involved in the development of GEM.app and GENESIS and is a widely acknowledged proponent of data sharing and matchmaking in the rare disease field.

Bartha Maria Knoppers, PhD

 

Advisory Board Member, The Genesis Project

Dr. Bartha Maria Knoppers, PhD, is Professor and Director of the Centre of Genomics and Policy at McGill University, Montreal Canada. She is one of the world leaders in bioethics and policy. Dr. Knoppers is uniquely engaged supporting large genomic and stem cell projects. For instance, she plays a central role in formulating the regulatory framework for the Global Alliance for Genomics and Health (GA4GH). Dr. Knoppers brings outstanding multidisciplinary expertise to our advisory board.

Michael Shy, MD

Advisory Board Member, The Genesis Project

Dr. Michael Shy, MD, is a Professor of Neurology at the Carver School of Medicine at University of Iowa. He is a world-renown leader and champion in clinical and basic research on peripheral neuropathies, one of the most common inherited disorders in the field of Neurology. A former President of the prestigious Peripheral Nerve Society (PNS), Dr. Shy is also the leading PI for the Inherited Neuropathy Consortium, the CMT-International Database, several NIH and foundation research grants, such as the CMT Association and the Muscular Dystrophy Association. His advice in his field of expertise are crucial to our decision making in the foundation. 

Matthis Synofzik, M.D.

Advisory Board Member, The Genesis Project

Dr. Matthis Synofzik, MD, is an Assistant Professor of Neurology at the University of Tubingen, Germany. His field of expertise includes the neurogenetic basis of movement disorders, ataxias, and dementias. He is the lead investigator of the international PREPARE ataxia consortium, has published on ALS, early forms of dementia and Alzheimer disease, and other degenerative brain disorders. His collaborative approach is key to our mission.

Marni Falk, MD

 

Advisory Board Member, The Genesis Project

Dr. Marni Falk, MD, is the Executive Director of Mitochondrial Medicine at Children’s Hospital of Philadelphia at the Children’s Hospital of Philadelphia with a focus on often devastating mitochondrial diseases. One of the most sought-after physicians for these disorder in the US and a highly successful scientist, she is a key adviser to the Foundation.