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.

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

Zach Brewer, CPN, Lead Application Developer

Daniel DeFabio, The Disorder Channel, Audio Producer

Blyth Lord, CPN, Executive Producer

Alison Me, CPN, Production Assistant

Effie Parks, Once Upon a Gene Podcast, Audio Producer

Devin Rojas, CPN, Associate Application Developer

Jennifer Siedman, CPN, Senior Producer and Director