BOARD MEMBERS

OF THE

GENESIS PROJECT

FOUNDATION

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.

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Howard Landis, MBA

Board member

Howard spent 28 years in private equity where he invested in and served on the board of a variety of privately owned companies before retiring in 2008.  He was diagnosed with a late onset form of Charcot-Marie-Tooth ("CMT") disease, a genetic neuromuscular disorder.  Howard has a BS in accounting from Shippensburg University and an MBA from Harvard. Howard is supporting the TGP-foundation board with his deep experience of a lifelong carrier in finance and business development. He is very interested in learning about and supporting the progress that the research community is making in identifying culprit genes for CMT and other rare diseases and wishes he had paid attention in his high school biology class.

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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.