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.
Origin
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.
NeuroJourney has been made possible by generous funding from individual donors and the Milbank Foundation, the Y.C. Ho and Michael Chiang Foundation, and the Ilene Beal Charitable Foundation. Translation has been made possible with support from the Division of Quality of Life and Pediatric Palliative Care, Stanford Medicine Children’s Health and Sanofi.
Suggestions for Using NeuroJourney Resources
Advocacy for the critical role that palliative care or a palliative-aware practice can play in supporting caregivers and building their sense of confidence and agency is woven through NeuroJourney.
Parents/Caregivers
- Understanding interconnected medical considerations
- Guidance to help build the care team
- Reflection on care goals and decisions they may encounter
- Prompts for conversations with specialists, family and others
Clinicians and Clinician-Educators
- Speaking with parents about the interconnectedness of medical considerations as changes in the central nervous system affect other bodily systems
- Preparing caregivers with point of care and anticipatory guidance for the medical, emotional and social issues they may encounter
- Encouraging shared decision-making
- Training clinicians with emphasis on palliative care and palliative-aware practice
Lead Authors
Julie Hauer, MD
Seven Hills Pediatric Center and Boston Children’s Hospital
Jennifer Siedman, MEd
Director of Community Engagement, CPN; mother of Ben (Sanfilippo Syndrome) who lived a full life of 18 years
Carol Trager
Director of Communications and Marketing, CPN
Contributing Authors and Reviewers
Leslie Walsh Cyprych, MS MPH CGC (Genetics)
William Robert (Bob) Defoor, Jr., MD MPH (Urology)
P. Galen DiDomizio, MD (Endocrine)
Arden Hill, MS CCC-SLP (Diet/Nutrition)
Marina Ma, MD (Orthopedics)
Patricia (Pat) O’Malley, MD (Pediatric Palliative Care)
Juliana Mariani, MD (Orthopedics)
Elliot Rabinowitz, MD (Pulmonology)
Kacy Seitz, ChFC, CLTC, ChSNC, (Financial Planning)
Sarah Casey, MSEd, Mother of Emerson (Gaucher Disease)
Steven Smith, MD (Sleep)
Barbara Swoyer, Mother of Jake (Dravet Syndrome)
Lauren Treat, MD (Neurology and Gastroenterology)
Production Team
Vanessa Boulas, Translator and Audio Narrator, French
Zach Brewer, CPN, Lead Application Developer
Daniel DeFabio, The Disorder Channel, Audio Narrator, English
Ximena Garcia-Quintero, MD, Translator and Audio Narrator, Spanish
Blyth Lord, CPN, Executive Producer
Alison Me, CPN, Production Assistant
Effie Parks, Once Upon a Gene Podcast, Audio Narrator, English
Jose Portundo, Translator and Audio Narrator, Spanish
Devin Rojas, CPN, Associate Application Developer
Jennifer Siedman, CPN, Senior Producer and Director
Carol Trager, CPN, Director of Communications and Marketing
