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This webinar is part eight of a 10-part seminar series entitled Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities and Disabilities (C6). The series is led by complex care pediatricians from the Hospital for Sick Children (SickKids) and Lurie Children’s Hospital, and representatives from Family Voices.

In this session Kate Holler, Sarah Perkins, Dr. Caroline Okorie, and Dr. Shelly Weiss discuss sleep.

See recaps of other seminars in this series:

The C6 seminar series is funded through a grant from the Lucile Packard Foundation for Children’s Health.

Webinar Recording


Kate Holler

Kate Holler is a rare disease family advocate, mother, and caregiver to her seven-year-old daughter Rowan. Rowan lives with a rare genetic disorder called recessive dystrophic epidermolysis bullosa (EB). Kate is passionate about promoting EB awareness and worked to raise funds for research for a cure. She has also served as a family advocate for Dell Children’s Medical Center and Children’s Hospital Association.

Sarah Perkins

Family Leader, Boston Children's Hospital

Sarah has spent her life navigating the healthcare system as a patient. As a result, she has seen the benefits of family and professional partnerships firsthand. She is currently a Family Leader for Boston Children’s Hospital. She has a Master of Arts in Pastoral Studies from Catholic Theological Union in Chicago. She also holds 3 US Masters Swimming Top 10 times as a relay swimmer.

Caroline Okorie, MD, MPH

Clinical Assistant Professor, Stanford School of Medicine Division of Pediatric Pulmonology, Asthma and Sleep Medicine

Dr. Okorie is board certified in pediatric pulmonology, sleep medicine, and general pediatrics and joined the Division of Pediatric Pulmonary, Asthma and Sleep Medicine in 2018. She obtained her medical degree and Master’s in Public Health at the University of Arizona before going on to a residency and chief residency in pediatrics at Oregon Health & Science University. She completed her fellowship training in both pediatric pulmonary medicine and sleep medicine at Stanford University. She has a passion for medical education and serves as an Associate Program Director for the Pediatric Residency Program at Stanford.

Shelly Weiss, MD

Professor, University of Toronto Sick Kids, Division of Paediatric Neurology

Dr. Weiss is a Paediatric Neurologist with expertise in epilepsy and sleep neurology. Dr. Weiss has held national leadership positions in sleep medicine including Past President of the Canadian Sleep Society. She has national education leadership, including her position as the Area of Focused Competence (AFC) vice-chair in Sleep Disorder Medicine for the RCPSC. Her research is focused on the medical and surgical treatment of drug-refractory epilepsy in children and interventions to improve sleep in children who are typically developing and have neurodevelopmental disabilities.

Related Grants

Findings from a survey of California-based caregivers that asked them about their experiences receiving peer support for caring for children and youth with special health care needs.

This fact sheet explains the methods used in a study of California caregivers of CYSHCN, including the study’s purpose, survey instrument, sample, survey distribution, data analysis, and more.