CPN | Two Tools for Providers of Children with Severe Neurological Impairment


Two Tools for Providers of Children with Severe Neurological Impairment

May 6, 2024, 3:00 PM ET

Watch an archived recording of this event

This event was for providers to get to know 2 resources available to you as you care for children with severe neurological impairment (SNI).

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. Following an overview demo, we will offer suggestions and ideas for introducing and using NeuroJourney with parents and colleagues in clinical settings.

The Family Support Program was launched by CNF in 2022 to help patient advocacy organizations and clinicians refer families to local service organizations to address social determinants of health. Some examples of services for families include access to food shelves, transportation assistance, and housing assistance. The program also tracks the outcomes of those referrals, measures the impact of organizational programs, and collaboratively aggregates data about how patient advocacy organizations are making an impact. Learn how you can utilize the Family Support Program for your patients and community.

You can receive NeuroJourney news and highlighted access to new resources by joining the NeuroJourney.org network.

Our Panel


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.

Child Neurology Foundation

The Child Neurology Foundation connects partners from all areas of the child neurology community so those navigating the journey of disease diagnosis, management, and care have the ongoing support from those dedicated to treatments and cures. Our expanding network of patients and caregivers, volunteers and advocates, researchers and clinicians is committed to helping one another along the path that leads to the best quality of care — and the highest quality of life—for every child.