Looking Ahead to 2023

The NeuroJourney Map: A Resource for Caregivers of Children with Severe Neurologic Impairment (SNI)

The complex medical needs of children with Severe Neurological Impairment (SNI) are daunting to caregivers who grapple with a multitude of symptoms and concerns without a roadmap. The NeuroJourney Map produced in association with pediatric specialists and expected to launch in late 2023, maps the issues caregivers and clinicians can anticipate over the arc of the child’s life to help them navigate the present and prepare for their future. The topics are explored in four phases through the lens of changes in the central nervous system and bring in a holistic, palliative point of view. Particularly unique to this tool, and a source of great pride, is that the NeuroJourney Map offers parents acknowledgment of the social and emotional challenges of loving a neurologically impacted child in the context of the whole family unit.

In March 2023, at the Annual Assembly of the American Academy of Hospice and Palliative Medicine, we heard from a clinician that the NeuroJourney Map “is going to change everything.” Indeed, it is hoped that the NeuroJourney Map will serve a wide range of families caring for medically complex children and will be a resource to a wider community of specialists who care for these children and teach others to do so.

Diversifying the Voices of the Network

CPN is committed to being intentional about understanding the experiences of families of color, to ensure that its resources are relevant to and resonate with BIPOC parents and to center their narrative. CPN is currently producing more stories/ voices of Black families and Spanish-speaking and/or LatinX caregivers and will be working with community partners to reach out to these families and their clinicians.

Developing a New Generation of Parent Champions

To build our capacity to reach more families and clinicians around the country, CPN is recruiting and training four new caregivers (parents) to tell their story and represent the CPN philosophy, programming and platform in live presentations and online. These live voices will augment those of parents and clinicians that are the heart of CPN.