Dear Friends and Supporters of CPN,

It is our pleasure to present Courageous Parents Network’s (CPN’s) first ever Annual Report, which encompasses 2022 and looks ahead to 2023 and beyond. Thank you for making it possible for CPN to even get to this point, nine years after I initiated what began as a heartfelt experiment:

Would it be possible to help reduce the isolation parents feel, mitigate the anxiety they have about medical decision-making, and optimize their sense of agency and acceptance/tolerance of grief by using caregiver and clinician voices speaking about all the issues, worries, fears—and joy—that come from caring for a seriously ill child? And to demonstrate and advocate for the role of palliative care in the process?

It turns out that it is indeed possible—and quite simply, where CPN is today has far surpassed my initial hopes. The digital platform is complemented by live-streamed events; presentations to clinicians, patient disease groups and industry; participation in research projects and more. We know that we are having impact through what we have learned in quantitative and qualitative research, and from what we hear directly from parents, in their own words (like those you will read from Nicole K. on page 6 of this report). Pediatric clinicians (like Anne Anderson on page 7) have become incredible champions of CPN and what it offers their patient families (and also what it offers them personally, as a resource for self-education and for training).

Why is this so? Because the heart and soul of what CPN offers is the voice of the parents as they orient, navigate, and move forward in their journey, and of the clinicians who support them. This voice is authentic, whole-hearted, and courageous. It is our secret sauce, the primary reason that families and clinicians trust us to help.

The key to all this accomplishment is “we.” CPN was my idea and vision, but all that it has accomplished and become is because of the incredible individuals on the CPN team: Alison, Billy, Carol, Chrissy, Claire, Devin, Janet, Jennifer, Kerri, and Zach. It is a true privilege, every day, to work with them on behalf of others. And the Board has been pivotal in pushing us for rigor and strategy; a special thank you to Stephanie whose term as Board Chair is ending and a warm welcome to Bob Searle who will be taking on this leadership role.

Illness in children is isolating. But because of you and your fellow generous donors, caregivers are not alone. Thank you! As we look ahead to our 10th year, which includes significantly diversifying the faces of the parents and clinicians featured, the forthcoming release of the NeuroJourney Map for families of children with severe neurological impairment and the launch of our Parent Ambassador initiative, we are grateful for your care and kindness in Getting us Here so we can go There. Please stay tuned and please stay with us.

With profound appreciation,

A Message from Our Board Chair

Every year 27,000 children are diagnosed with a potentially life limiting illness. And for these parents, their world as they knew it is gone. As Chair of the Board, I am pleased to present Courageous Parents Network’s first annual report. Over the past nine years, we have made significant strides in achieving our mission, thanks to the dedication and generosity of the team, our supporters, and the network of parents who volunteer their voices and experiences. I am grateful to my predecessor, Steve Segal, for his leadership and guidance in supporting CPN’s growth.

Courageous Parents Network’s commitment to innovation and collaboration has enabled us to help families all over the US and beyond to feel less alone in the toughest moments and move toward a new vision of family life. And we have also pioneered the most significant understanding of the lived family experience for the clinician communities that strive to care for the sickest of children.

This June we will complete a strategic planning process that asks deeper questions about the goals and future of the organization. The Board is proud of CPN’s thought leadership and relevance as evidenced in the 2022 double-digit growth in membership of parents and clinicians and traffic to the website, the 800+ clinicians reached in live or virtual presentations, and the outreach activities to patient groups.

We remain deeply grateful to our donors who make it possible for CPN to make a meaningful impact in the lives of families.

With gratitude,

Team Members

Blyth Taylor Lord, MEd

Founder & Executive Director

Jennifer Siedman, MEd

Director of Community Engagement

Chrissy Salley, PhD

Director of Clinician Engagement & Outreach

Janet Duncan, MSN, CPNP

Advisor, Educational Content

Carol Trager

Communications & Marketing

Alison Me

Communications & Development Associate

Claire Mills

Production & Social Media Associate

Bill Parker

Cameraman & Video Editor, Hindsight Media

Zachary Brewer

Lead Application Developer

Devin Rojas

Stephanie Connaughton Board Chair

Associate Application Developer

From CPN’s Chrissy Salley, Director of Clinician Engagement and Outreach

Since its inception CPN has worked closely with clinicians, a single term that we use to encompass clinicians of all types (e.g., physicians, social workers, nurses, advance practice providers, child-life specialists and more), researchers, and educators. I come to CPN as a pediatric psychologist who has worked in academic medicine and who also currently serves as a clinician, educator, and researcher. The national conversation about caregiver well-being is focused almost entirely on the aging population, but parent caregivers who care for children and adolescents have incredible unmet needs.

My role at CPN is to help clinicians support their patient families, understand the family experience, and provide education to fellow colleagues. I collaborate closely with clinicians, researchers, and educators across settings to increase their awareness and use of the breadth of resources offered by CPN. This work involves regularly presenting to groups within hospitals, community settings, professional organizations, and at conferences. It is my hope that my own experience as a clinician in pediatric hospital settings, and what I observe from my colleagues across the country, enriches this work. And always, I foreground the parent caregiver voice, to acknowledge parents’ expertise and position them as stakeholders in the field of pediatric medicine.

Finally, I contribute to CPN’s expanding efforts to address caregiver well-being. Because the “caregiver” tends to focus more on our aging population, those who care for youth are often left out of these conversations. I aim to bring the many caregiver voices of our CPN families to this dialogue, and to collaborate with the CPN team and CPN families to develop resources to address their unmet needs.