About Us - professional advisory Council

The Professional Advisory Council (PAC) serves as a consultative body to the Illinois Spina Bifida Association. The PAC is a multidisciplinary group of professionals that provide clinical services to individuals with spina bifida as well as conduct research in the field. Members of the PAC contribute to the mission of ISBA by providing the organization with their professional expertise, diverse knowledge of spina bifida communities, and relationships with colleagues, agencies, and resources at both the local and national level.

Annual Spina Bifida Research Awards

The Illinois Spina Bifida Association (ISBA) is pleased to announce the winners of its annual Professional Advisory Council Research Awards for excellence in publishing in the area of spina bifida clinical research. Prizes are awarded for the best papers by a clinician or researcher published in a peer-reviewed journal. There are no geographic restrictions for nominations.

  • Winner: Tess S. Simpson, PhD, et al, “Cognitive disengagement syndrome in pediatric spina bifida,” Child Neuropsychology

  • First Honorable Mention: Colleen Stiles-Shields, PhD, et al, “Caregiver expressed emotion in families of youth with spina bifida: Demographic, medical, and family correlates,” Journal of Pediatric Psychology

  • Second Honorable Mention: Diana M. Ohanian, PhD, et al, “Bidirectional, longitudinal associations between chronic pain and family functioning in youth with spina bifida,” Families, Systems, & Health

Thanks to all the researchers and clinicians who choose to spend their valuable time and expertise to advance the understanding of spina bifida and the care and treatment of people living with the condition.

The Illinois Spina Bifida Association is grateful for the assistance of Professional Advisory Council chair Kathy Zebracki, PhD, and all of the PAC members, outside reviewers, and donors who make these awards possible.

2022 Research Awards

  • Winner: Adrien M. Winning, MA, et al, “Parents' school-related concerns and perceived strengths in youth with spina bifida,” Child: Care, Health and Development

  • First Honorable Mention: Zoe R. Smith, PhD, et al, “Working memory and cognitive flexibility predict growth trajectories of sluggish cognitive tempo in youth with spina bifida,” Child Neuropsychology

  • Second Honorable Mention: Colleen Driscoll, PhD, et al, “Self-Management in Youth with Spina Bifida: Associations with Parent Factors in the Context of a Summer Camp Intervention,” Journal of Pediatric Psychology

2021 Research Awards

  • Winner: Zoe R. Smith, PhD, et al, "Cross-Lag Model of Medical Responsibility and Skills in Youth With Spina Bifida," Journal of Pediatric Psychology

  • First Honorable Mention: Adrien M. Winning, MA, et al, "Neurocognitive Predictors of Adaptive Functioning Trajectories among Youth with Spina Bifida," Child Neuropsychology

  • Second Honorable Mention: Jaclyn Lennon Papadakis, PhD, et al, "Sociodemographic Factors and Health-Related, Neuropsychological, and Psychosocial Functioning in Youth With Spina Bifida," Rehabilitation Psychology

2020 Research Awards

  • Winners (tie):

    • Diana M. Ohanian, MA, et al, “Longitudinal Associations Between Pain and Psychosocial Adjustment in Youth With Spina Bifida,” Journal of Pediatric Psychology

    • Adrien Winning, MA, et al, "Development of an Observational Parental Scaffolding Measure for Youth with Spina Bifida," Journal of Pediatric Psychology

  • Honorable Mention: Tessa Kritikos, PhD, et al, "Discrepancies in Parent Perceptions of Child Vulnerability in Youth With Spina Bifida," Journal of Pediatric Psychology

2019 Research Awards

  • Winner: Colleen Stiles-Shields, PhD, et al, “A Systematic Review of Behavioral Intervention Technologies for Youth With Chronic Health Conditions and Physical and Intellectual Disabilities: Implications for Adolescents and Young Adults With Spina Bifida,” Journal of Pediatric Psychology

  • First Honorable Mention: Colleen F. Bechtel Driscoll, MA, MS, et al, “Camp-based Psychosocial Intervention Dosage and Changes in Independence in Young People with Spina Bifida,” Developmental Medicine & Child Neurology

  • Second Honorable Mention: Tess S. Simpson, PhD, et al, “Parent Stress for Patients Followed in a Multidisciplinary Spinal Defects Clinic,” Clinical Practice in Pediatric Psychology

2018 Research Awards

  • Winner: Alexa Stern, MA, et al, “A Longitudinal Study of Depressive Symptoms, Neuropsychological Functioning, and Medical Responsibility in Youth With Spina Bifida: Examining Direct and Mediating Pathways,” Journal of Pediatric Psychology

  • First Honorable Mention: Caitlin Murray, PhD, et al, “A Multimethod, Case-Controlled Study of Sleep–Wake Disturbances in Adolescents with Spina Bifida,” Journal of Pediatric Psychology

  • Second Honorable Mention: Colleen F. Bechtel Driscoll, MA, MS, et al, “Parental Distress and Stress in Association with Health-Related Quality of Life in Youth with Spina Bifida: A Longitudinal Study,” Journal of Developmental & Behavioral Pediatrics

2017 Research Awards

  • Winner: Christina Holbein, PhD, et al, "Milestone achievement in emerging adulthood in spina bifida: a longitudinal investigation of parental expectations," Developmental Medicine & Child Neurology

  • First Honorable Mention: Alexandra Psihogios, PhD, et al, "Testing the Utility of a Bio-Neuropsychosocial Model for Predicting Medical Adherence and Responsibility During Early Adolescence in Youth With Spina Bifida," Journal of Pediatric Psychology

  • Second Honorable Mention: Jaclyn L. Papadakis, MA, et al, "Psychosocial and Family Functioning Among Latino Youth With Spina Bifida," Journal of Pediatric Psychology

2016 Research Award

  • Winner: Caitlin B. Murray, MA, et al, "Developmental Course and Determinants of Sleep Disturbances in Adolescents With Spina Bifida," Journal of Pediatric Psychology

  • First Honorable Mention: Brad E. Dicianno, MD, et al, "Effectiveness of a Wellness Program for Individuals With Spina Bifida and Spinal Cord Injury Within an Integrated Delivery System," Archives of Physical Medicine and Rehabilitation 

  • Second Honorable Mention: Rachel M. Wasserman, PhD, et al, "ADHD and Attention Problems in Children With and Without Spina Bifida," Topics in Spinal Cord Injury Rehabilitation

2015 Research Award

  • Winner: Jaclyn Lennon Papadakis, MA, "Resilience and Disruption in Observed Family Interactions in Youth With and Without Spina Bifida: An Eight-Year, Five-Wave Longitudinal Study,” Journal of Pediatric Psychology 

  • First Honorable Mention: Caitlin B. Murray, MA, "Observed Macro- and Micro-Level Parenting Behaviors During Preadolescent Family Interactions as Predictors of Adjustment in Emerging Adults With and Without Spina Bifida," Journal of Pediatric Psychology

  • Second Honorable Mention: Alexandra M. Psihogios, MA, "Condition Self-Management in Pediatric Spina Bifida: A Longitudinal Investigation of Medical Adherence, Responsibility-Sharing, and Independence Skills," Journal of Pediatric Psychology

To learn more about clinical trials on spina bifida, click here.

Professional Advisory Council Members

Haluk Altiok, MD

Robin Bowman, MD

Lynn Grabher Bradtke, MD

Patricia Braun, DNSc

Ann Flanagan, PT, PCS

Mohan S. Gundeti, MD

Grayson Holmbeck, PhD

Valerie Kattouf, OD

Sue Mukherjee, MD

Jackie L. Papadakis, PhD

Monique Ridosh, PhD, RN

Lawrence C. Vogel, MD

Kathy Zebracki, PhD, Chair