For 34 years, I have been involved with understanding the complexity of child, adolescent, and adult neurodevelopmental disability and community outcomes of health, functioning, and participation. I bring expertise in qualitative and quantitative methods for modelling health status, resiliency and missed opportunities across childhood, adolescent and young adult life for individuals born prematurely. I have trained 54 postdoctoral fellows in their use of developmental and functional assessments, biomarkers, and clinical outcomes research, of which 95% have gone on to successful scientific and clinical-academic medical leadership positions.
Throughout my career, I have asked the question how do individuals with prematurity at highest risk for early onset neurodevelopmental disabilities fare with respect to their long-term physical, developmental and social health outcomes? In my first U.S. academic job, I was responsible for neurodevelopmental consultative services linked to primary medical care and community care coordination (UCP, ARC, People’s Inc.) for individuals age birth to 90 years with CP and related neurodevelopmental disabilities. For these efforts, I received the Sir James Carreras International Variety Club Award.
In my academic positions at Brown University and University of Chicago, I have continued to develop interdisciplinary regional management teams to promote functioning and participation for individuals with neurodevelopmental disabilities. With interdisciplinary colleagues, I developed a pediatric functional independence measure (WeeFIMTM) that has been used for 3-7 year outcomes in three NIH Multicenter Studies: Cryosurgery for Retinopathy of Prematurity (Pediatrics. 2000;106(5):998-1005. PMID: 11061766), Fetal Surgery for Myelomeningocele (Childs Nerv Syst. 2011 Jul;27(7):1083-8. PMID:21327591), and the CoolCap trial of cooling for neonatal encephalopathy (Guillet et al. Pediatr Res. 2012 Feb;71(2):205-9. PMID:22258133). More recently, I developed the Warner Initial Development Evaluation of Adaptive and Functional Skills (WIDEA-FS), which tracks emerging motor, communicative, and adaptive competencies in the first two years, and the Child Health Impairment-Functioning, Participation, and Participation (CHI-FPS) Checklist for children 7-18 years. These instruments were respectively normed on over 1500 neurotypical children and over 1500 children with disabilities. These tools were validated against specific standardized motor, communicative, developmental, psychological, and educational achievement tests. These indicators of challenges in daily activities and their impact on family life were subsequently implemented in community populations in New England, the International Rett Registry, the Western Australia Down Syndrome Registry, the U.S. and Australian Newborn Encephalopathy-Hypothermia and Erythropoietin Trials, and the Cerebral Palsy Research Registry. In all of these efforts, longitudinal strategies for tracking physical developmental and behavioral health outcomes, as well as functioning, participation and individual and family well-being occurred through interdisciplinary teams of health and rehabilitation professionals committed to enablement.
Johns Hopkins University
Baltimore MD
- Neurodevelopment, behavior, genetics
1985
Brown University
Providence RI
- Pediatric Residency
1982
Northwestern University
Chicago Illinois
MD - Medicine
1979
Northwestern University
Evanston Illinois
BA - Mathematics
1973
Introducing the Spectrum of Neurodiversity.
Introducing the Spectrum of Neurodiversity. Pediatr Ann. 2026 Jul; 55(7):e243-e245.
PMID: 42406044
Neurodiversity and Intellectual Disability: Opportunities and Challenges for Functioning and Participation Across the Life Course.
Neurodiversity and Intellectual Disability: Opportunities and Challenges for Functioning and Participation Across the Life Course. Pediatr Ann. 2026 Jul; 55(7):e252-e259.
PMID: 42406047
Transdisciplinary fetal-neonatal neurology training integrates women's and children's health with life-course brain capital strategies: a narrative review.
Transdisciplinary fetal-neonatal neurology training integrates women's and children's health with life-course brain capital strategies: a narrative review. Front Neurol. 2026; 17:1756627.
PMID: 42266580
Family: a powerful modifier of outcome.
Family: a powerful modifier of outcome. Pediatr Res. 2026 Apr 24.
PMID: 42026216
Hydrocortisone in Preterm Infants and School-Age Functional Outcomes: Follow-Up of a Randomized Clinical Trial.
Hydrocortisone in Preterm Infants and School-Age Functional Outcomes: Follow-Up of a Randomized Clinical Trial. JAMA Pediatr. 2026 Feb 01; 180(2):134-143.
PMID: 41359352
Anxiety, social responsiveness, and grit among patients with KCNJ11-related neonatal diabetes compared to unaffected siblings.
Anxiety, social responsiveness, and grit among patients with KCNJ11-related neonatal diabetes compared to unaffected siblings. Acta Diabetol. 2026 Apr; 63(4):621-627.
PMID: 41591478
An interdisciplinary fetal neonatal neurology collaborative promotes integrative life-course brain health.
An interdisciplinary fetal neonatal neurology collaborative promotes integrative life-course brain health. Front Neurol. 2025; 16:1725289.
PMID: 41573402
Accounting for social and environmental drivers of neurodevelopment: lessons from a pilot study in a pediatric Colombian cohort.
Accounting for social and environmental drivers of neurodevelopment: lessons from a pilot study in a pediatric Colombian cohort. Pediatr Res. 2026 Jun; 99(7):2660-2668.
PMID: 41188610
Impaired expectations: the challenge of ableism in paediatrics.
Impaired expectations: the challenge of ableism in paediatrics. Lancet Child Adolesc Health. 2026 Jan; 10(1):62-70.
PMID: 41202835
Impact of fine particulate matter air pollution (PM2·5) on Nigerian children's performance on tests of cognitive and neurobehavioral development at age seven years.
Impact of fine particulate matter air pollution (PM2·5) on Nigerian children's performance on tests of cognitive and neurobehavioral development at age seven years. Environ Int. 2025 Nov; 205:109843.
PMID: 41138631
Martha Bridge Dencla Award in Cognitive Neuroscience
Child Neurology Society
2026
Arnold J Capute Award
American Academy of Pediatrics (AAP) Council on Children with Disabilities (COCWD)
2025
Frederic Schulte Lifetime Achievementnt Award in Pediatrics
University of Chicago
2024
Aldrich Lifetime Achievement
American Academy of Pediatrics Section of Developmental and Behavioral Pediatrics
2023
Jane Sweeney Award
American Academy of Physical Therapy
2020
American Academy of Cerebral Palsy and Developmental Medicine(AACPDM) Mentor Award
2016
March of Dimes Jonas Salk Health Leadership Award for Research
2013
Pathways Pioneer Award for Leadership in Care of children with neuromotor delays
2012
AACPDM Gayle Arnold Award for Best Scientific Paper with Athena Patrianarchos
2008
Rhode Island Health Certificate of Recognition for Children with Special Health Care Needs
2003
Best Doctors in America 2001
2001 - 2019
RI Human Services Feather Award for care coordination for individuals with disabilities
2001
American Academy of Physiatry Excellence in Research Writing Award with K Ottenbacher
2000
Rhode Island Governor’s Award, Early Intervention Coordinating Committee
2000
International Variety Club Award forPhysician Leadership in Neurodevelopmental Disabilities
1995
Developmental Disabilities Planning Council of Western NY Community Service Award for health equity
1993
Down Syndrome Parent Group of Western NY Community Service Award for Medical care and advocacy
1992
AACPDM United Cerebral Palsy Award for Best Best Scientific Poster
1991
AACPDM Sage Award for Best Audiovisual Presentation with K. DiGaudio and J. Schwiergerling
1990
Johns Hopkins Young Investigator Day: Postgraduate Fellowship Certificate of Merit for Research
1985