Chairman and Founder
Paul Gross is a career software executive having held positions at multiple public companies including Microsoft Corporation and Borland. He has spent much of the last decade working on advancing the pace of medical research in neuroscience. Prior to founding the Cerebral Palsy Research Network, Mr. Gross was the co-founder of the Hydrocephalus Clinical Research Network (hcrn.org) and an advisor to the Adult Hydrocephalus Clinical Research Network (ahcrn.org). He is also on the National Institute of Neurological Disorders and Stroke (NINDS) Advisory Council. He also is the co-chair of the research committee of the Hydrocephalus Association.
Amy Bailes, PT Ph.D. is a physical therapist at Cincinnati Children’s Hospital Medical Center and an Affiliated Assistant Professor in the Department of Rehab Sciences at the University of Cincinnati. Dr. Bailes has 30 years of pediatric clinical experience and has been recognized by the American Physical Therapy Association as a Pediatric Clinical Specialist since 1993.Her clinical practice focuses primarily on the care of children with cerebral palsy (CP). Dr. Bailes’ research involves the study of measurement tools, novel interventions in CP, and therapy service utilization. Dr. Bailes earned a BS in physical therapy at Indiana University, an MS at Boston University and a PhD. in clinical epidemiology at the University of Cincinnati.
Mary Gannotti, PT Ph.D. is a physical therapist who teaches at the University of Hartford in CT and performs clinical research at the Shriners Hospital for Children, Springfield MA. Dr. Gannotti has more than 25 years of pediatric clinical experience and has been involved in clinical research for more than 15 years. Her clinical practice focuses primarily on the care of children and adults with cerebral palsy (CP). Dr. Gannotti’s research involves the study of measurement tools, cultural influences on care, factors influencing treatment effectiveness, and long term physical and social outcomes of adults with CP. The Section on Pediatrics of the American Physical Therapy Association recognized her in 2015 for sustained outstanding research in the field of pediatric physical therapy. Dr. Gannotti earned a BS in physical therapy and a doctorate in medical anthropology at the University of Connecticut, and had post-doctoral training at Yale University, School of Medicine in the Department of Pediatrics.
Susan D. Horn, Ph.D., is senior scientist, Institute for Clinical Outcomes Research (ICOR), and vice president of research, International Severity Information Systems, Inc. (ISIS), both located in Salt Lake City, Utah. In addition, she is an Adjunct Professor in the Departments of Biomedical Informatics and Physical Medicine and Rehabilitation, University of Utah School of Medicine. From 1968 to 1992, she was professor at The Johns Hopkins University in Baltimore, Maryland, where she conducted research, taught biostatistics and health services courses, and directed the Robert Wood Johnson Foundation Program for Faculty Fellowships in Health Care Finance.
In 1979, Dr. Horn began work on severity of illness measurement, which led to the Comprehensive Severity Index (CSI®), with inpatient, ambulatory, long-term care, hospice, and rehabilitation modules. The CSI software system collects disease-specific, physiologic severity data for clinical practice improvement and risk-adjusted outcomes and applies to all patients–adult and pediatric–and all medical, surgical, and psychiatric conditions.
Dr. Horn has been principal investigator for practice-based evidence clinical practice improvement projects studying pediatric severity of illness, asthma and bronchiolitis, GI and CABG surgery patients, pressure ulcers in long-term care, hospice, post-stroke and joint replacement rehabilitation, and labor and delivery care. Recent projects include practice-based evidence studies in spinal cord injury, traumatic brain injury, falls prevention, chronic pain in cancer and non-cancer patients, and repositioning times for frail patients funded by National Institutes of Health, Agency for Healthcare Research and Quality, and National Institute for Disability and Rehabilitation Research.
Dr. Horn has authored over 230 publications on statistical methods, health services research, severity of illness measurement, clinical practice improvement methodology, and quality of care and is editor of Clinical Practice Improvement Methodology: Implementation and Evaluation, 1997, available by contacting ISIS Inc.
Dr. Horn earned a B.A. in mathematics at Cornell University, and a Ph.D. in statistics at Stanford University.
Edward A. Hurvitz, M.D., is Professor and Chair, and James W. Rae Collegiate Professor, Department of Physical Medicine and Rehabilitation (PM&R) at the University of Michigan Medical School. He has been involved in the diagnosis and management of pediatric onset disabilities, especially cerebral palsy (CP) for over 25 years. His research focuses on adolescents and adults, including areas such as health and fitness, health-related outcomes, and transition to adulthood. Dr. Hurvitz has been chair of the department of Physical Medicine and Rehabilitation since 2006. His work with cerebral palsy has led to membership on the Children’s Motor Study Group, an NINDS/NIH sponsored group of experts in the field. He is also currently co-leading the International Cerebral Palsy Health Promotion Group, which is interested in research related to obesity, activity, and risk of chronic disease in adults with cerebral palsy. In 2013, the American Academy of Cerebral Palsy and Developmental Medicine recognized his work with the Chambers Lifespan award and lecture. Dr. Hurvitz co-founded and co-directs the Cerebral Palsy Research Consortium of Michigan with Drs. Seth Warschausky (Michigan) and Nigel Paneth (Michigan State University). He has been funded for research as a PI or Co-PI from the NIH, NID(IL)RR, United Cerebral Palsy, and from industry. In addition to his work with the CPRN, he is currently a co-investigator on a field-initiated research project from NIDILRR examining sedentary activity in adults with cerebral palsy (Peterson PI); a project co-investigator on an RERC (Meade PI) examining cognitive factors affecting heath self-management in adolescents and adults with cerebral palsy and spina bifida (Warschausky project PI); and a mentor for a K award on metabolic dysregulation in adults and adolescents with CP (Peterson PI). Dr. Hurvitz is active in the American Academy of Cerebral Palsy and Developmental Medicine, as well as the Association of Academic Physiatrists.
Jacob Kean, PhD, CCC-SLP, is an Associate Professor in Health System Innovation and Research, Departments of Population Health Sciences and Communication Sciences and Disorders, University of Utah, and Research Speech-Language Pathologist, Salt Lake City VA Health Care System. He completed his doctorate in Speech and Hearing Sciences in 2008 and served subsequently and concurrent with his faculty appointments at Indiana University as an Indiana CTSI KL2 Faculty Scholar, a Visiting Scientist at the Boston University Rehabilitation Outcomes Center, a Visiting Scholar at the Center for Rehabilitation Research Using Large Datasets at the University of Texas Medical Branch, and a VA Career Development Awardee. Dr. Kean completed the NIH Training Institute for Dissemination and Implementation Research in Health (TIDIRH) and a post-graduate Master’s degree in Measurement, Evaluation, Statistics and Assessment (MESA) at the University of Illinois – Chicago.
Dr. Kean’s research focuses on the development and refinement of clinical and outcome measures and the implementation of evidence-based practices, including implementation of measures, in real-world practice settings. His past and current projects include studies of rehabilitation and disability, such as the development and implementation of measures of self-management following mild traumatic brain injury, the evaluation of the responsiveness and minimally important differences of PROMIS pain and depression measures, the refinement of measures of brain injury recovery and outcome, and study of the implementation of evidence-based cognitive rehabilitation for traumatic brain injury. Most recently, his work has included study of large data sets collected prospectively in Practice-Based Evidence studies, and retrospectively, in health information exchanges (HIEs), to better understand healthcare utilization, access to care, and quality of care for rehabilitation populations during the chronic phase of illness or injury.
Dr. Kean serves on the American Congress of Rehabilitation Medicine Practice and Evidence Committee, which is responsible for reviewing and endorsing rehabilitation-relevant clinical practice guidelines, and on Brain Injury – Interdisciplinary Special Interest Group panels on Disorders of Consciousness, Outcomes Measurement, and Military/Veterans Issues.
Unni G. Narayanan, MBBS, M.Sc., FRCS(C), is a paediatric orthopaedic surgeon at The Hospital for Sick Children (SickKids). He is an Associate Professor in the Department of Surgery at the University of Toronto (U of T) and a Senior Scientist at the Bloorview Research Institute. He also acts as a paediatric orthopaedic consultant at the Holland Bloorview Kids Rehabilitation Hospital in Toronto, Erinoak Children’s Treatment Centre in Mississauga, Grandview Children’s Rehabilitation Centre in Oshawa and Five Counties Children’s Centre in Peterborough.
A native of Madras (Chennai), India, and a graduate of Madras Medical College, he completed his orthopaedic residency at the University of Minnesota, a cerebral palsy/gait analysis fellowship at Gillette Children’s Hospital, and his paediatric orthopaedic fellowship at SickKids. He followed this with a master’s degree in clinical epidemiology at U of T before being appointed to his current position.
His clinical practice is focused primarily on the care of children with cerebral palsy (CP). He also has an interest in the management of congenital, and acquired lower limb deformities and length discrepancies and paediatric trauma.
Dr. Narayanan’s research involves the exploration of patient priorities and preferences for the development of outcome measures for use in clinical trials to evaluate the effectiveness of interventions and health-care technologies for musculoskeletal disorders in children. His research is funded by the Canadian Institutes of Health Research (CIHR) and other agencies. His work has been recognized with the Mac Keith Press Young Investigator Award from the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) in 2005, the Angela Kuo Memorial Investigator Award from Pediatric Orthopaedic Society of North America (POSNA) in 2006, and the Arthur H. Huene Memorial Award from POSNA in 2013 for his work on CP hip outcomes.
He has served on the Board of Directors of the AACPDM and POSNA, been a member of and chaired various committees in both Societies. In 2006, he was the Scientific Program Chair of the 60th (Diamond Jubilee) Annual meeting of AACPDM. He has also served a five-year term on the Orthopaedic Examination Board for the Royal College of Physicians and Surgeons of Canada.
A significant proportion of his time is devoted to teaching orthopaedic and paediatric residents and paediatric orthopaedic fellows at SickKids, where he serves as the Director of the Fellowship program as well as the director of the paediatric orthopaedic program for the Orthopaedic Residents of the University of Toronto. He has received numerous teaching and research awards for his work. Dr. Narayanan has travelled widely as an invited speaker or visiting professor both within North America and internationally to discuss his research and lecture on cerebral palsy, outcomes research, evidence based orthopaedics and a wide range of paediatric orthopaedic subjects.
Garey Noritz, M.D., is an Internist and Pediatrician at Nationwide Children’s Hospital. He is medical director of the Complex Health Care Clinic, which provides a medical home to children and adults with neurodevelopmental disabilities. He is Associate Professor of Pediatrics at The Ohio State University, and the Director of the Comprehensive Cerebral Palsy Program at Nationwide Children’s Hospital.
Dr. Noritz is a graduate of Brown University School of Medicine, and a Fellow of the American Academy of Pediatrics and of the American College of Physicians. He is Board Certified in Internal Medicine, Pediatrics, Neurodevelopmental Disabilities, and Hospice and Palliative Medicine. He is active at the national level in advocating for the care of children and adults with disabilities. He is on the Executive Committee of the Council on Children with Disabilities of the American Academy of Pediatrics, and is past Chair of the Lifespan Committee of the American Academy for Cerebral Palsy and Developmental Medicine. In 2013, he was awarded “Physician of the Year” by Nationwide Children’s Hospital.
Dr. Noritz’s research interests include bone health in patients with disabilities, transition of children with disabilities to adult models of care, palliative medicine, and the respiratory care of patients with neuromuscular diseases.
Dr. Noritz was the lead author of the American Academy of Pediatrics’ recent clinical report, “Motor Delays: Early Identification and Evaluation”, which advises Pediatricians to institute screening for motor problems in early childhood.
Jerry Oakes, M.D., completed his medical school training in 1972 and neurosurgery residency in 1978, both at Duke University. While a student, he came under the influence of Guy Odom and was allowed to see the potential of an academic neurosurgical career. During his residency, he spent a year in Toronto, first in neurology and then in pediatric neurosurgery at the Hospital for Sick Children, coming into contact with its stimulating faculty of Robin Humphreys, Harold Hoffman, and Bruce Hendrick. Following the completion of his residency, he spent the next year in Europe; first at Great Ormond Street Hospital for Sick Children in London and then in Zurich with Professor Gazi Yasargil. Returning to Duke, he spent the next fourteen years, developing the pediatric neurosurgical service. In 1992, he and his family relocated to Birmingham, Alabama and the Children’s Hospital where he is the Hendley Professor of Pediatric Neurosurgery. In the past twenty years, this service has grown and now has four full-time pediatric neurosurgeons with a busy clinical practice.
Along the way, he has produced more than 350 peer-reviewed papers and 50 book chapters. He has served as president of the Neurosurgical Society of Alabama and the Southern Neurosurgical Society. He has co-authored the textbook ” The Chiari Malformations” to be published in 2013. In 2002, he became the editor of Pediatric Neurosurgery and president of the American Society of Pediatric Neurosurgeons. He served 12 years on the American Board of Pediatric Neurosurgery first as a director and then as vice-chair.
Michele Shusterman, founder of CP NOW, is a parent of a child with CP and publisher of the web site and blog, CP Daily Living. In 2011 she began CP Daily Living to fill the gap in educational resources and support she and her husband experienced when their own daughter was diagnosed with CP. Beginning with practical tips, emotional support, information about treatments and centralized access to resources, CP Daily Living and its social media pages have evolved into an international virtual meeting space and advocacy platform for families, adults with CP and the professionals who work with them. It has become a space to encourage people with CP and their families and to share and mobilize international research efforts. Michele is passionate about educating families and the public about CP and is a consumer content reviewer for CP Alliance Australia’s “About CP” initiative. In 2014 she proposed a more modern framework for diagnosing and discussing cerebral palsy with families. Her opinion piece, “Introducing the term ‘early developmental brain injury/interference’ and a new framework for discussing cerebral palsy”, was published in Developmental Medicine and Child Neurology. It has generated ongoing dialogue among professionals and families about how to best promote proactive and timely support for people with CP. With CP Now, Michele has created a formal non-profit structure to extend CP Daily Living’s educational and support services.