Dystonia Care Pathway

Overview: The session will start with an overview of Dystonia – What is it?  Why is is Important? How can we diagnose it? We will then transition to hearing from two parents who have children with CP and dystonia about how dystonia impacts their child on a day-to-day basis. An overview of the new AACPDM Care Pathway on Management options for Dystonia and CP will then be provided followed by an open guided discussion with all attendees. 

Presenter Information: 

Dr. Darcy Fehlings is a Developmental Paediatrician and Professor in the Department of Paediatrics at the University of Toronto.  She is a Senior Clinician Scientist in the Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital. Her clinical and research work focuses on the innovation and evaluation of interventions for children with cerebral palsy including hypertonia interventions, early detection, constraint therapy, dystonia, and pain management.  She has led the AACPDM Care Pathways for ‘Dystonia in CP’. She has held positions as the inaugural head of the Uof T Division of Developmental Paediatrics (2006-2022) and President of the American Academy of Cerebral Palsy and Developmental Medicine (2015).

Dr. Bhooma Aravamuthan is an Assistant Professor and Research Director of the Cerebral Palsy Center at the Washington University School of Medicine in St. Louis. As a pediatric movement disorders specialist and neuroscientist, she conducts translational research on dystonia pathophysiology in cerebral palsy. Her national leadership roles have included chairing and co-chairing the Scientific Programs for two national organizations: the American Academy of Cerebral Palsy and Developmental Medicine and the Child Neurology Society. She also leads the Cerebral Palsy Research Network’s efforts for Dystonia Quality Improvement. Her research awards include the 2022 American Academy of Neurology Jon Stolk Movement Disorders Research Award and the 2022 Child Neurology Society Philip R. Dodge Young Investigator Award. She is married and a mom to three children – twin boys and a girl.

Angi Harris is the current Chair of the AACPDM Community Council, she is a parent of a young woman with Cerebral Palsy. Angela is also a Clinical Practice Lead for Nursing at a children’s treatment center outside of Toronto, she supports the Cerebral Palsy and Botox clinics and tirelessly advocates for those with lived experience to ensure their voice and their needs are at the forefront.

Brenda Agnew is the proud mother of two boys, Chase and Maclain and my younger son Maclain has severe Cerebral Palsy and profound hearing loss as a result of a condition known as Kernicterus, a brain injury that results from untreated jaundice. Since Maclain was diagnosed, Brenda has tried to be a tireless advocate for better systems and programs for children with special needs. There is much personal empowerment in providing substantial input on how policies, programs, and priorities are created and communicated, and how we incorporate and engage families. She feels honored to have great opportunities to develop, foster, and grow relationships with professionals, fellow parents, and caregivers. She is an active member of volunteer organizations such as CP-Net, CHILD-BRIGHT Citizen Engagement Committee, PONDA, and the AACPDM Community Council. In addition to her role as Marketing Director at Gluckstein Lawyers, she is also a School Board trustee with the HCDSB, where she is also the Special Education Advisory Committee Chair.