2022 CPN Annual Report

2022 Annual Report

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,

Blyth Lord Founder and Executive Director

“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.”

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

Nicky with her son Avery

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.

Jazmyne with her daughter Crimson

From CPN’s Jennifer Siedman, Director of Community Engagement

Families are at the heart of everything we do at CPN, and I have the distinct pleasure of interacting with many of them. This role calls me to reflect on everything I learned as a caregiver to my son Ben (Sanfilippo Syndrome) and to harness my experience to help other parents. Listening to the needs of patient disease organizations and our biotech partners in patient advocacy has expanded my lens, from

my own experience to the needs of families coping with a broad range of diseases. Together, these perspectives have helped CPN be a leader in developing tools and programming to promote caregiver well-being.

And, an unexpected benefit is that witnessing other parents’ decision-making processes has given me more confidence in the choices I made during Ben’s life, lessening the regret I might feel as a bereaved parent myself.

Most recently, I have had the tremendous satisfaction of translating my years of experience as Ben’s mother into the writing and development of CPN’s new tool, the NeuroJourney Map (see Looking Ahead, page 11) which will launch later in 2023. It has been gratifying to collaborate with physician specialists to create what we hope will be a valuable resource for families confronting so many decisions in the face of so much uncertainty.

“Families are at the heart of everything we do at CPN, and I have the distinct pleasure of interacting with many of them.”

Jennifer with her son Ben Matt

Ben with his children Julia, Clementine & Beckett

From Courageous Mom Nicole K.

My son Matthew is medically complex with several neurological disorders/diagnoses, and during one of his stays at Connecticut Children’s Medical Center one of his palliative care RNs recommended CPN as a resource. I have watched so many of the videos during the quiet hours of the night, connecting with perfect strangers who are amazing parents that inspire me to be brave, have courage, and take one day at a time. Some days are easier than others.

Matthew is my youngest of three boys. He was diagnosed with microcephaly, spastic quadriplegic cerebral palsy, polymicrogyria, west syndrome, now Lennox-Gastaut syndrome. He is non-verbal, completely non-mobile, G-tube dependent and will forever be dependent on another person for all activities of daily living (ADLS).

Because of Courageous Parents Network, I know that I am not the only mother whose heart has been shattered over

and over again, as more diagnoses present themselves and continue to force Matthew to struggle and suffer daily. I am not the only mother who has cried rivers of tears for her sweet baby and who mourns the life we were “supposed” to have. I am not the only mother who would do anything for her child, anything to give him the best quality of life. It is finally sinking in that there is a strong, beautiful, community of parents, caregivers, and medical professionals who understand what this feels like. Thank you.

“Our journey is similar to stories that appear on the CPN website, and it is finally sinking in that I am not alone as a mother in this daily struggle.”

Lexi with her brother Barry

“CPN also helps families by providing videos and blogs that help address concerns for the whole family, whether that is for the parents, siblings, or grandparents.”

From Courageous Clinician Anne Anderson, RN, CHPPN

As the nurse coordinator with the palliative care team at Seattle Children’s Hospital and a 2022 recipient of the Courageous Provider Award, I appreciate CPN immensely. When working with families who feel isolated with a medically complex child, recommending CPN provides them with a sense that they are not the only one navigating a medical journey and all that goes along with this. For a family facing a difficult decision and feeling that there is no right answer, the videos of parents who chose different paths help them understand that loving parents make decisions based on what aligns with their own family’s values. CPN also helps families by providing videos and blogs that help address concerns for the whole family, whether that is for the parents, siblings, or grandparents.

Part of my work also involves supporting colleagues who have distress and fear around how to work with families facing medical challenges or end of life. CPN’s parent videos provide the best teaching about what pediatric palliative care really is; they highlight the issues families face. I have used videos in teaching when I present to a hospice that rarely cares for kids when they are having trepidation about taking on a child. I encourage those with worry about caring for kids to spend some time looking through videos, to highlight that it isn’t all scary, and that there is much joy in caring for children and families.

Thank you for providing such a wonderful resource for patients, families and providers.

The Courageous Provider Awards recognize individuals or teams advancing the impact of pediatric palliative care through their work and collaboration with others. CPN is grateful to our funders — the Ilene Beal Foundation and the Margaret Stewart Lindsay Foundation — whose generosity makes it possible to honor and celebrate these leaders, and to the providers, patients and families that nominated them. The 2023 awards will be given in December, and nominations for 2024 will open in June.

Sacha with her son DD

Gabe with his brother Sage

2022 REVENUE

$631,150 INDIVIDUALS 66% $62,500 CORPORATE 7% $264,500 FOUNDATIONS 27% $4,200 HONORARIA <1% $2,160 INTEREST <1% TOTAL: $964,510

2022 EXPENSES

$74,297 FUNDRAISING 9% $102,151 ADMIN/STRATEGY 13% $266,204

PROGRAMMING: CLINICIAN OUTREACH 33% $359,924

PROGRAMMING: CAREGIVER CONTENT & OUTREACH 45% TOTAL: $802,576

Visitors to CourageousParentsNetwork.org

Because of our donors, the CPN website resources are available 24/7 at no cost to families or clinicians. In 2022, 89,690 unique individuals visited CPN.org, there were 258,706 page views, and 254,100 video views. Meanwhile, some caregivers and clinicians chose to register with CPN and in 2022, membership rose to include 2,274 family members and 2,779 clinician members.

89,690 unique individuals visited CPN.org

258,706 page views on CPN.org

254,100 video views on CPN.org

Sharing Courageous Parents Network Ideas and Perspectives

CPN’s reputation as a thought leader and trustworthy voice for the parent experience grows year after year. A long-tail, positive effect of the recent rise of distance learning is that clinician and patient groups invite CPN to present virtually, allowing us to reach many more people on topics relating to pediatric palliative care, shared decision-making, important interventions (e.g., clinical trial), fostering “good parent” beliefs, and bereavement. In 2022, CPN reached 940 clinicians and 360 affected family members in patient groups. Our team also regularly contributes and/or co-authors articles and studies for important publications in the field.

Surveying Our Caregivers and Clinicians

CPN partnered with City Square Associates to collect information and feedback from clinicians and parents on personal experiences and engagement with CPN, with the intention of assessing CPN’s performance relative to our objectives as well as help CPN move forward with the best resources for families and clinicians. Key findings include:

Parents and caregivers reported that:

as a result of interacting with CPN resources they feel less alone

CPN helped them

understand their own grief

they became more knowledgeable about palliative care

Clinicians reported that CPN is most valued as a window into the family experience, with:

60% 53%

saying they strongly agree that CPN taught them about the family experience

reporting that CPN made them a better resource for patient families as they move through the illness journey and are faced with difficult decisions

reporting that CPN made them a better resource for patient families as they received a difficult diagnosis and got their bearings

2022 Program Highlight: In the Room

In addition to the ever-growing content in the digital library and our many presentations to clinicians, industry and patient disease groups, CPN hosts live-streamed “In the Room” events on pressing issues for parents and the clinicians who care for these families. Some of these issues are niche (e.g., when the sick child is a twin) and some apply to many (e.g., supporting the siblings). Most events include a didactic component delivered by a clinician, followed by reflections from “experienced” parents. In the Room events are offered free of charge and are open to all. In 2022, CPN offered ten programs with 560 people attending. The events are made possible with grants from Sanofi, Astellas, RegenxBio, BioMarin, Amicus Therapeutics, and bluebird bio.

In the Room Topics:

Operating a Mini ICU; Providing 24/7 Care in the Home

The Primary Care Pediatrician: Quarterback of Your Child’s Care Team?

When the Child is a Twin

Continuing the Family Bonds and Honoring the Child’s Legacy

Financial Planning for Parents of Fully Dependent Children

A Screening of Unseen: How We are Failing Parent Caregivers and Why it Matters

Traveling with a Medically Complex Child

What It Means to “Just Show Up”

Talking to and Supporting the Siblings about Illness, Death & Grief

Does Spirituality and/or Religion Help?

Kenny

Sibings Beckett and Clementine

Looking Ahead to 2023

The NeuroJourney Map: A Resource for Caregivers of Children with Severe Neurologic Impairment (SNI)

The complex medical needs of children with Severe Neurological Impairment (SNI) are daunting to caregivers who grapple with a multitude of symptoms and concerns without a roadmap. The NeuroJourney Map produced in association with pediatric specialists and expected to launch in late 2023, maps the issues caregivers and clinicians can anticipate over the arc of the child’s life to help them navigate the present and prepare for their future. The topics are explored in four phases through the lens of changes in the central nervous system and bring in a holistic, palliative point of view. Particularly unique to this tool, and a source of great pride, is that the NeuroJourney Map offers parents acknowledgment of the social and emotional challenges of loving a neurologically impacted child in the context of the whole family unit.

In March 2023, at the Annual Assembly of the American Academy of Hospice and Palliative Medicine, we heard from a clinician that the NeuroJourney Map “is going to change everything.” Indeed, it is hoped that the NeuroJourney Map will serve a wide range of families caring for medically complex children and will be a resource to a wider community of specialists who care for these children and teach others to do so.

Diversifying the Voices of the Network

CPN is committed to being intentional about understanding the experiences of families of color, to ensure that its resources are relevant to and resonate with BIPOC parents and to center their narrative. CPN is currently producing more stories/ voices of Black families and Spanish-speaking and/or LatinX caregivers and will be working with community partners to reach out to these families and their clinicians.

Developing a New Generation of Parent Champions

To build our capacity to reach more families and clinicians around the country, CPN is recruiting and training four new caregivers (parents) to tell their story and represent the CPN philosophy, programming and platform in live presentations and online. These live voices will augment those of parents and clinicians that are the heart of CPN.

Barb with her son Jake

Our Mission

To orient and empower parents and others caring for children with serious illness, by providing resources and tools that reflect the experience and perspective of families and clinicians.

What We Offer

CPN is a nonprofit organization that provides curated digital resources and programming to help caregivers advocate for children living with serious illness and navigate the illness journey. At the center of CPN are parent and clinician voices that illuminate the lived family experience and focus on psycho-social and emotional needs, regardless of diagnosis and without bias.

CPN resources include videos, podcasts, newsletters, a blog, social media posts, educational guides and learning pathways written for families, and a clinician portal offering materials for use in self- and colleague education. Programs include virtual events, and virtual and in-person presentations to clinician audiences, industry and patient organizations. CPN also partners with others to bring the family perspective to clinical research and a wide range of communication (or media) outlets.

Our Board

Stephanie Connaughton

CPN Board Chair (term ends June 2023)

Innovation and Marketing Advisor

Diane Meier, MD

Director Emeritus

Center to Advance Palliative Care (CAPC)

Vinny Chiang, MD

Chief Medical Officer

Boston Children’s Hospital

Rob Go Co-Founder and Partner

NextView

Terry Flotte, MD

Dean

UMass Medical School

Jenny Toolin McAuliffe

Parent

Bob Searle

Incoming CPN Board Chair

Partner, The Bridgespan Group

Eric Bartholomae

CFO and EVP

Kate with her friends