Leadership team
Medical And Scientific Advisory Board
Ethan Perlstein, PhD
Medical & Scientific Advisor, Scientific CureGuide
Dr. Ethan O. Perlstein is responsible for setting the scientific direction of the Foundation. Ethan uniquely straddles the worlds of Silicon Valley entrepreneurship, drug discovery and development, and patient-led medicine. Ethan received a PhD in 2006 from Harvard University in the Department of Molecular and Cell Biology while working in the laboratory of Professor Stuart Schreiber. He completed an independent postdoctoral fellowship at the Lewis-Sigler Institute at Princeton University from 2007 to 2012.
Ethan is an author on 19 peer-reviewed scholarly publications, including the discovery of a novel mechanism of action for the antidepressant Zoloft based on studies in yeast cells.
Since its founding in 2014, he is CEO of Perlara PBC, the first biotech PBC partnering with highly motivated families to develop treatments and cures for rare genetic diseases applying “evolutionary pharmacology.” Perlara’s first joint venture Maggie’s Pearl is the commercial sponsor of a Phase 3 trial of epalrestat for the treatment of PMM2-CDG at the Mayo Clinic. Prior experiences include the Christopher & Dana Reeve Foundation as their first Chief Scientific Officer and later as the CEO of the EveryONE Foundation (EOF), cofounded by Dr. Tim Yu and Julia Vitarello, whose mission is to make individualized medicines safe and accessible to everyone.
Dr. Wendy Chung
Medical & Scientific Advisor
Precision Medicine Resource Leader-Irving Institute
Medical Director: Columbia Genetic Counseling Graduate Program
Wendy Chung, M.D., Ph.D. is a clinical and molecular geneticist and the Kennedy Family Professor of Pediatrics and Medicine. She received her B.A. in biochemistry and economics from Cornell University, her M.D. from Cornell University Medical College, and her Ph.D. from The Rockefeller University in genetics. Dr. Chung directs NIH funded research programs in human genetics of birth defects including congenital diaphragmatic hernia, congenital heart disease, and esophageal atresia, autism, neurodevelopmental disorders, pulmonary hypertension, cardiomyopathy, obesity, diabetes, and breast cancer. She leads the Precision Medicine Resource in the Irving Institute at Columbia University.
Dr. Scott Demarest
Dr. Scott Demarest
Medical & Scientific Advisor
Dr. Scott Demarest is an assistant professor in the Department of Pediatrics, Division of Neurology and the Adult & Child Consortium for Health Outcomes Research and Delivery Science. He is board certified in Neurology with special qualification in Child Neurology as well as Epilepsy. His clinical practice and research focus on the evaluation and treatment of early-life genetic epilepsies. This includes clinical trials for novel therapies for epilepsy, conduct of natural history studies and the development of better outcome measures for early life epilepsies. He received a Bachelor of Science in biology from the University of Texas at Austin before going on to medical school at the University of Texas Health Science Center in San Antonio. He completed his residency in Pediatrics and child neurology at Children’s National Health System in Washington, DC and his Epilepsy fellowship at Children’s Hospital Colorado.
indu Navar
Founder, EverythingALS
Over the past 20 years, Indu has experience in being Co-founder/CEO of software companies and taking them through successful exits, strategic partnerships and M&A. She is an Investor and Strategic Advisor in many startups. She is currently CEO and Founder of EverythingALS. She co-founded geek.ly and Xendota. Prior to that, Indu was Managing Director at Woodside Capital Partners where she advised software companies on strategic financing transactions and M&A. She was Founder and CEO of Serus Corporation, provider of SAAS platform for companies with outsourced manufacturing. The company was acquired by E2OPEN (Nasdaq:EOPN). Prior to Serus, Indu has been on the ground floor of several successful technology companies including Healtheon (WebMD), Silicon Graphics, Black and White Software (Segue). She started her career at NASA in Moffett Field, California. Indu has B.S Electrical Engineering from Bangalore University, India and M.S. in Computer Science from California State University, Chico.
Dr. Devorah Segal
Dr. Devorah Segal
Medical & Scientific Advisor
Dr. Devorah Segal earned her MD and PhD in Neuroscience at Icahn Mount Sinai School of Medicine. She completed her pediatrics and pediatric neurology training at Rutgers New Jersey Medical School and then completed a fellowship in Pediatric Neuro-Oncology at NYU Langone Medical Center. She spent several years practicing general child neurology and neurogenetics, including helping lead a research neurogenetics clinic. She is now a pediatric neurologist and neuro-oncologist at NYU Langone, where she is associate director of the Comprehensive Neurofibromatosis Center. She treats children with primary brain tumors and patients of all ages with neurofibromatosis and schwannomatosis. Dr. Segal leads several clinical trials treating pediatric brain tumors, neurofibromatosis, and several other genetic disorders with neurologic components.
Why Project 8p?
I have been incredibly inspired with my patients living with 8p and their families. When I first encountered 8p, almost nothing was known about this condition. Thanks in large part to the efforts of Project 8p, we are learning more about the symptoms and course of this condition and are starting to move towards specific treatments and even a cure. Project 8p is a testament to what can be accomplished by a group of passionate, motivated families who are committed to improving the lives of their loved ones in partnership with the medical and scientific community.
Eric Schultz
Medical & Scientific Advisor
Prof. Dennis Lal
