By Lindsey Topping-Schuetz on behalf of Courageous Parents Network.
At Courageous Parents Network (CPN), we believe that family stories are powerful tools for change. For parents of medically complex children, sharing lived experiences can ease isolation, offer guidance, and inspire hope. For clinicians, these stories reveal the realities of care beyond the hospital, underscoring the psychosocial and emotional needs of the whole family.
Through these stories, CPN has long promoted pediatric palliative care as an essential layer of support for families navigating serious illnesses.
Building Champions for Palliative Care
In 2023, to expand its reach, CPN launched the Parent Champion Program—a first-of-its-kind initiative that trains and supports parents to become advocates for palliative-informed care. The program equips parents to share their personal journeys in ways that both comfort other families and educate clinicians and patient organizations.
The inaugural cohort of six Parent Champions represented diverse diagnoses and family experiences. Some of the parents were bereaved, others were still actively caregiving, but all shared the desire to use their hard-earned wisdom to benefit others. Together they took part in intensive training in Boston, building skills in storytelling, advocacy, and presentation—and finding deep connection with one another in the process.
As one Champion reflected, “To be in community with others walking a similar journey was invaluable. We often feel isolated as parents and caregivers. This program gave us not only tools, but also a community that understands.”
Over their 16-month term, Champions delivered more than 20 presentations to clinician groups, professional conferences, and family organizations. Their stories illuminated the benefits of pediatric palliative care and helped spread awareness of CPN resources across the country.
A Parent’s Perspective
I first learned about the program as a parent myself. After my son Owen’s rare diagnosis, I left my career to become his full-time caregiver, nurse, and advocate. Like many families, we found our footing when we met our palliative care team. They brought back hope at a time when we felt only fear and uncertainty.
When I applied to be a Parent Champion, I was nervous—it had been years since I had worked outside my caregiving role—but I was excited by the chance to amplify our story. The experience was transformative. Through the training and mentoring I received, I found new confidence as an advocate, and I saw how my story could be part of a greater story—one that builds bridges between families and clinicians.
Today, I have the privilege of helping to lead the Parent Champion Program. Walking alongside new Champions as they find their voices and make an impact has been one of the most meaningful parts of my journey.
Expanding the Program
With the success of the first class, CPN recently launched its second application cycle and received over 60 applications from three countries. Applicants included mothers, fathers, bereaved parents, and even clinicians who are also parents of medically complex children. Each story was unique, but all reflected the same motivation: to use lived experience to empower others and to elevate the importance of palliative care.
Moving Forward
The Parent Champion Program is expanding CPN’s impact in ways our small team could never have done alone. It ensures that families and clinicians hear directly from parents’ voices that inspire, educate, and advocate for palliative-informed care.
For me, and for the many Champions who have stepped forward, this work is about helping families spend more time living fully and less time struggling with the weight of medical complexity—supported by the compassionate care that palliative care provides.
