Learn About NeuroJourney.org

This event was designed for providers to get to know this new educational resource for families and others caring for children with Severe Neurological Impairment (SNI). Following an overview demo, we offered suggestions and ideas for introducing and using NeuroJourney with parents and colleagues in clinical settings.

About NeuroJourney

Caregivers accompanying a child with Severe Neurological Impairment (SNI) grapple with a multitude of symptoms and their interconnected causes. NeuroJourney is an educational resource that presents many aspects of the SNI disease trajectory in a series of phases—the arc of a life—to help parents and other caregivers navigate the present and prepare for the future. Medical topics are discussed through the lens of changes in the central nervous system and how they affect other bodily systems. Social and emotional topics are also represented, along with commentary that brings in a holistic, palliative point of view.

NeuroJourney is an initiative of Courageous Parents Network (CPN), created in partnership with Julie Hauer, MD FAAHPM; Rachel Thienprayoon, MD MSCS FAAHPM FAAP, Cincinnati Children’s Hospital; and Live Well Collaborative, Inc., with significant contributions from advising medical reviewers, parent authors, and content editors.