BOARD MEMBERS
OF THE
GENESIS PROJECT
FOUNDATION
Stephan Zuchner, M.D., Ph.D.
CEO, The Genesis Project
Dr. Stephan Zuchner is co-founder and CEO of The Genesis Project foundation. He has early recognized the need to built a genomic data information system for real-time sharing of genome level data.
He has received his degrees from the University RWTH Aachen, Germany and an honorary doctoral degree (h.c.) from the Semmelweis Medical School in Budapest. Over a career of 25 years in neurology, neuropathology, and human genetics, he has been involved in identifying nearly 100 Mendelian genes and risk loci for diseases, such as peripheral neuropathies, motoneuron disorders, ALS, spastic paraplegias, retinopathies, ataxias, Parkinson and Alzheimer disease, psychiatric diseases, and more. Many of these discoveries are now part of routine genetic testing assays around the world; some are subject to pharmacological studies and are being tested in clinical trials.
For a decade (2012-2023), he served as the Chairman for the Department of Human Genetics (DHG) at University of Miami, during which time the unit has grown to the #2 genetic research department in the USA (NIH/BRIMR ranking). He has added programs in precision medicine, rare diseases, epigenetics, and cancer genetics. Currently he serves as the inaugural chief genomics officer (CGO) at the Miller School of Medicine.
He is providing leadership roles to key research projects, such as the All of Us Research Project grant to UM, the Undiagnosed Diseases Network center, the Rare Disease Clinical Research Center for Inherited Neuropathies (RDCRC INC), ClinGen, and more. He is also serving pro bono on the BOD of the Undiagnosed Diseases Network Foundation in addition to advising on scientific boards for the Muscular Dystrophy Association and the Charcot-Marie-Tooth Association.
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.
Rebecca Schule, M.D.
Clinical Director, Board member
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.
Steven Altschuler, MD
Board Member
Dr. Altschuler is the managing director of Healthcare Ventures at Ziff Capital, where he co-leads the firm’s efforts towards investing in and facilitating the startup and development of companies with potentially transformative technologies that emphasize cellular and molecular approaches to human disease. Dr. Altschuler developed this expertise while cofounding Spark Therapeutics to develop and commercialize the preclinical and clinical gene therapy programs advanced at the Children’s Hospital of Philadelphia (CHOP) and other institutions. Dr. Altschuler served as Spark’s board chair from its founding through its acquisition by Roche in 2019.
Dr. Altschuler is the former executive vice president for Health Affairs and CEO of the University of Miami Health System. He also served as CEO for CHOP from 2000 to 2015. Dr. Altschuler is a member of the board of directors of WW (formally Weight Watchers International), Orchard Therapeutics, AsclepiX Therapeutics, ImVaX inc. and Platelet Biogenesis. He is also an independent trustee of the Brigham and Women’s Physician Organization at Mass General Brigham.
Kevin Sami
Board Member
Kevin is personally affected by CMT and is honored to join the board of the GENESIS project foundation. He is an investment analyst in New York City, where he also serves as president of the Medhat F. Sami Foundation and as treasurer of Musical Chairs Chamber Ensemble, a Staten Island arts organization. He has previously worked as an investment analyst at Apis Capital Advisors and served on the steering committee of Families for Safe Streets, a New York traffic safety organization. He holds a BBA in finance from the University of Wisconsin-Madison
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 a 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 several international ataxia consortia, 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.