Courageous Parents Network

08/16/2026

Team CPN and its 16 runners are off running the Falmouth Road Race!!! And have raised $67,400 so far!!! Woot woot!! Thank you!!!!

Fundraising is still open!
https://raceroster.com/events/2026/112177/the-2026-asics-falmouth-road-race/pledge/team/926804

08/14/2026

Supporting a child transitioning to adulthood: You need to care enough to take the time to understand, to communicate with other physicians, to do paperwork, to figure it out.

08/12/2026

Courageous Mom Amanda describes her relationship with hope after her daughter Andalyn was diagnosed: "Hope was no longer full of sunshine and rainbows; it had become complex and heavy. Apprehension and anxiety about my child’s future blurred the horizon until its rainbows dissolved into hazy mists of uncertainty, and the oppressive darkness of grief blotted out the warmth of its sunshine. Hope was elusive and cruel, depriving me of its goodness. It was suddenly something only other people got to have."

What is your relationship with hope?

Katie Krawzak, fellow Blogger in Residence, recently wrote a piece about her role as a palliative care provider. There was a part of her piece that I really...

08/11/2026

What does it mean to ensure that children with medical complexity truly belong at home, in their schools, and in their communities?

In her latest blog, Courageous Parents Network Blogger-in-Residence Holly weaves together the story of her sister, Heidi, with her own experience parenting a medically complex child to explore how home- and community-based supports have transformed the lives of countless families. As these essential services face an uncertain future, Holly reflects on the progress that made inclusion possible and why protecting it matters now more than ever.

Her piece is both a tribute to what families have gained and a powerful reminder of what could be lost.

A family’s story reveals why Medicaid, disability supports, and community-based care are essential for children with medical complexity to live and thrive at...

08/05/2026

Register today for the August 20th PPC Webinar - Improving Pediatric End of Life Legacy Building at Home.

In this webinar, the presenter will discuss the implementation of legacy interventions for families to do at home. These Memory Making kits, aimed to independently facilitate legacy activities at home, allow for the creation of tangible keepsakes while also creating intangible meaning-making in the process.

08/04/2026

Welcome to CPN’s newest Blogger in Residence, Dr. Adebimpe Adewusi. You can read her first piece on the CPN blog at CourageousParentsNetwork.org/blog (link in bio)

08/04/2026

What happens when a physician suddenly becomes the parent instead of the provider?

In the debut blog from our newest Blogger in Residence, mother and pediatrician Adebimpe Adewusi shares how her daughter's unexpected birth and complex medical needs transformed her understanding of grief, communication, and compassionate care.

After an emergency C-section, a pediatrician faces her daughter's rare diagnoses and discovers healthcare through a parent's eyes.

08/03/2026

Hope is something families and care teams can carry together.

In this letter to parents from the voice of a palliative care provider, Katie writes, "Hope can feel heavy. Again and again, we humbly watch you break down your big hopes into smaller hopes to survive this hour, this day, this minute, or this breath. We hope you know we hope with you."

As the parent of a child who is ill, someone has undoubtedly said to you, “You’re so strong- I don’t know how you do what you do.” Pediatric Palliative Care...

08/01/2026

YES, as they are doing in Northern California, pediatric palliative care professionals and parent advocates must clearly work together to find better funding models and improve outcomes for children and their families... Against the heartless headwinds of cuts to Medicaid that threaten these families and such programs.

In our latest edition of House Happenings, our CEO Shekinah Eliassen reflects on USA TODAY’s recent visit to George Mark Children’s House and the national spotlight it brings to pediatric palliative and respite care.

Her message honors the families who shared their stories, the care teams who make extraordinary moments possible, and the growing movement to ensure that every family facing a life-limiting illness can access compassionate, family-centered care.

We invite you to read Shekinah’s message and help carry this work forward: by volunteering, donating, advocating, or simply sharing our story. Every action helps strengthen George Mark Children’s House while building greater awareness and support for children and families everywhere.

Read our latest blog: georgemark.org/a-national-spotlight-on-george-mark-childrens-house/

Learn how you can help: georgemark.org/get-involved