Elsa G. Shapiro, Ph.D., A.B.P.P. (American Board of Examiners in Professional Psychology)
She is Professor of Pediatrics and Neurology, Division of Pediatric Behavioral Neuroscience, University of Minnesota, Minneapolis, MN. She is retired, but remains a part-time faculty member. She has a Ph.D. in Psychology from the University of Minnesota and took her internship and post-doctoral training at National Children's Medical Center in Washington DC. She founded and directed (1974-2006) the pediatric neuropsychology division at the University of Minnesota.
Dr. Shapiro is internationally known for research in neurocognitive and neurobehavioral manifestations of genetic neurodegenerative disorders, and also their relationship to neuroimaging and other surrogate markers.
She has developed methods of longitudinal assessment of neurocognitive functions, delineated the neurocognitive phenotypes of several genetic disorders, studied the relationship between quantitative neuroimaging and neuropsychology in treated and untreated children, and examined the characteristics of dementia in children with neurodegenerative disease. She has more than 90 peer-reviewed publications and invited chapters. She has developed and published tests and measures for preschool and impaired children. She was the co-Principal Investigator of the NIH-supported Lysosomal Disease Network and Principal Investigator of Longitudinal Studies of Brain Structure and Function in the Mucopolysaccharidoses until 2014. She was also co-Principal Investigator of a Natural History study of Sanfilippo syndrome. She has been consulting on neurocognitive endpoints in patients with rare diseases for more than 10 years. Her expertise is broad with special interests in lysosomal and peroxisomal diseases.
Dr. Shapiro also has a strong interest in the effects of poverty on the developing brain and previously led a large study of the effects of lead burden and other social and biological variables on the cognitive development of high-risk inner city children and has consulted on the effects of cerebral malaria and HIV on neurodevelopment in African children.
In addition to her research, she was the founder of the Pediatric Neuropsychology training program at the University of Minnesota in 1974, trained many post-doctoral fellows and directed the autism program for several years. She has mentored 11 fellows and junior faculty in research in neurodegenerative diseases.
She has conducted workshops and given lectures on cognitive and behavioral endpoints around the world, presented to the FDA and EMA and was the 2017 WORLDsymposia keynote presenter.
In December 2016 Dr. Shapiro chaired an international consensus conference to determine cognitive endpoints in MPS disorders. This conference, attended by the FDA and EMA and sponsored by eighteen pharmaceutical companies, produced published expert statements .
In February 2017 Dr. Shapiro gave the keynote address at the WorldSymposium Lysosomal Disease Research and Conference, presenting: “Understanding and measuring neurodegeneration in childhood onset lysosomal diseases". In August of 2017 she was awarded with the Visionary Leader Award by the National MPS Society of the US.
Jennifer Greenberg, MBA
Overseeing operations, project deliverables and trainings, Jennifer Greenberg brings expertise in diverse project management, communications and development. With a background in education, visual communication and engagement, she approaches materials with the end user in mind. She is adept at managing complex projects and teams. Ms. Greenberg has extensive work directing programs and steering initiatives to increase across-organization stakeholder buy-in. In addition to rare disease work, she works with leaders to increase organizational performance.