Meet the Team
Executive Director - Dup15q Alliance
Vanessa Vogel-Farley is the Executive Director of the Dup15q Alliance and currently serves as the Research & Development Strategy Lead for RARE-X. Previously, she was at the University of Minnesota, Center for Neurobehavioral Development. She has also served as the Clinical Research Coordinator for the Division of Developmental Medicine Laboratory of Cognitive Neuroscience, Boston Children’s Hospital, working on collaborations with scientists from MIT and Harvard examining several clinical populations, including autism. She possesses 15 years of experience in data collection methods as well as expertise in non-profit and research operations, patient advocacy and support, non-profit management, and broad knowledge of child development neuroscience/psychology research and administration.
Favorite Quote: “A journey of a thousand steps begins with a single step.” – Lao Tzu
Bina Maniar Shah
Founder, President - Project 8 P
In 2018, Bina founded Project 8p to accelerate research with the goal of treatment for chromosome 8p heroes like her daughter Karina. Her family resides in New York City where Bina earned her B.S. in Finance & Marketing from NYU Stern Business School as well as her M.B.A. from Columbia University. She has over 15 years of experience in finance in the areas of mergers and acquisitions, private and public equity investing, real estate development, and property management.
Director - Ring 14
Yssa DeWoody, PhD, is the Co-founder and Director of Ring14 USA, a non-profit focused on improving the quality of life for
those impacted by anomalies on the 14th chromosome
through research, advocacy, and community support. This
work is a labor of love motivated by her third daughter, Marie,
who was born with the ultra-rare Ring Chromosome 14
Syndrome which is characterized by early onset intractable epilepsy, global developmental delays, intellectual disabilities
and a host of other challenges.
Daniel Lowenstein, MD
Executive Vice Chancellor and Provost
Wilderness enthusiast and world traveler
Dr. Daniel H. Lowenstein, an internationally known epileptologist, is executive vice chancellor and provost of UCSF. He has served as director of the UCSF Epilepsy Center and president of the American Epilepsy Society. He joined UCSF after serving as dean of medical education at Harvard Medical School, where he earned his medical degree.
Lowenstein spent many years at UCSF as professor of neurology and director of the Epilepsy Research Laboratory in the School of Medicine. A prolific writer and scholar, he has received virtually every teaching award given by UCSF's School of Medicine. His interests include the molecular and cellular changes in neural networks following seizure activity and injury, the genetic basis of epilepsy, and therapy for abnormally prolonged seizures known as status epilepticus.