CPN 2023 Annual Report

2023 Annual Report

“…a heartfelt, robustly vulnerable and courageous realigning of one’s life with another.”

Dear Friends and Supporters of CPN,

Recently, I sat by the stream on my family’s property in Vermont. In the middle of the stream is a pale orange rock and the middle of the rock has become a smooth carved-out bowl shape. When the water is a certain level, it flows into the bowl, circles a bit, and then flows out.

After our daughter Cameron died, in 2001, my husband Charlie and I sprinkled some of her ashes into that bowl and watched the clear springtime water circle them about, and then carry them downstream where they became part of life’s ecosystem. Next to the stream at that place, we have placed a granite marker with an excerpt from a Buddhist prayer. It reads “Walk with me, Hold my hand, Say Good-bye, We meet at the source every moment.”

Sitting at that place these 23 years later, listening to the sound of the water flowing downstream and watching it spin through the bowl of the rock, I saw this all as a perfect metaphor for Courageous Parents Network. Families of children living with serious medical conditions come towards the rock, encounter the heart of CPN (whose origin is my family’s experience with Cameron), and then flow downstream. There they become part of a network of love and wisdom and guidance.

Yes, Courageous Parents Network is an annoyingly long name for an organization, but at the time it was crucial to incorporate both the words Courage and Parents. Courageous is built around the word coeur which is French for heart. Poet and philosopher David Whyte writes: “Courage is the measure of our heartfelt participation with life. … Courage is what love looks like when tested by the simple everyday necessities of being alive.” And then, to illustrate his definition, he names parents as the best example of courage. “No glamour in the outward show, deserving of no medal, but on the inside a heartfelt, robustly vulnerable and courageous realigning of one’s life with another.”

It seems to me that (re)alignment is the perfect word. The caregivers who share their stories with CPN families are demonstrating the myriad ways they align their daily lives and their inner lives around the well-being of their child. The palliative-minded clinicians who contribute their expertise and experience align themselves with the child and family’s hopes.

And as we begin the year of celebrating CPN’s 10th Anniversary, our team is reflecting on how our ideas and expectations have aligned around the families and clinicians we serve. For that privilege there are so many to recognize and thank: certainly the parents and clinicians whose voices have shaped our offerings; our board members, past and present, who have helped professionalize CPN and shape strategy; the incredible staff, past and present, who make CPN possible and better every single day; and you and your fellow donors, who are willing to see and support the courage of these families. This is a shared journey and that shared journey is the source. Thank you for aligning yourself with us on behalf of others.

With great appreciation,

Blyth Lord Founder and Executive Director

A Message from Our Board Chair

When our daughter was diagnosed with cancer in 2009, my wife and I found ourselves living every parent’s worst nightmare. We had a million questions, some we couldn’t even articulate, and we felt desperate, helpless, and scared. Even 15 years later, writing these words brings back all of those feelings.

We were lucky: we lived in the Boston area, and between Boston Children’s Hospital and Dana-Farber Cancer Institute we had access to the best care in the world. As our daughter’s condition worsened, we also experienced the benefits of palliative care (although we’d never heard that term and wouldn’t have known what it meant).

We did the best we could, but looking back there are things I wish I had done differently. I replay conversations I had with my daughter; I think about how I could have supported my son and wife better. In short, I have regrets.

CPN wasn’t around back then, but when I met Blyth in 2014 and heard about her work, I realized right away what an incredible resource CPN was for parents who find themselves caring for a seriously ill child. I’m inspired by the mission, by Blyth’s creativity and compassion, and most of all by her ability to channel her grief into serving other courageous parents.

This report describes the incredible work that Blyth and her dedicated and talented team are doing to ensure that parents feel less isolated, more confident as advocates for their children, and can move forward with maximum healing and minimal regret.

With gratitude,

Bob Searle Board Chair

Team Members

Blyth Taylor Lord, MEd Founder & Executive Director

Jennifer Siedman, MEd Director of Community Engagement

Chrissy Salley, PhD Director of Clinician Engagement & Outreach

Carol Trager Communications & Marketing

Alison Me Communications & Development Associate

Claire Mills Production & Social Media Associate

Bill Parker Cameraman & Editor

Zachary Brewer Lead Application Developer

Devin Rojas Associate Application Developer

Sarah Casey Manager, Falmouth Race Fundraiser

Noah

Bob and Norah

2023 Program Highlights

NeuroJourney

A Full Arc: Anticipatory Guidance for Families of Children with Severe Neurological Impairment

Families of a child with a severe neurological impairment, or SNI, typically encounter both medical issues and daunting physical, social and emotional challenges. These children often have complex care coordination and symptom management needs. Medical and symptom treatment decisions are present throughout the child’s life.

Decisional uncertainty is a leading challenge for both clinicians and parents of these children. Lack of prognostication can result in clinicians preparing parents repeatedly or not at all. In fact, research has identified parents as feeling unprepared, or that they had the “pretense of preparedness,” for their child’s end of life.

NeuroJourney, launched in November 2023 after more than two years in development, seeks to address the lack of resources to support anticipatory guidance for families living with SNI. A collaboration of CPN and

multiple medical specialists, it is a digital tool designed to help caregivers navigate the present and prepare for the future across the disease trajectory. Further, this innovative tool positions CPN as a trusted resource well beyond our roots in pediatric palliative care, elevates our voice as thought leaders, and certainly furthers our reach to families.

NeuroJourney has opened the door to many, many collaborations. CPN’s primary outreach has been to hospital-based clinicians, who are a central channel to caregivers and are also medical educators. Through department meetings, lunch & learns, and pediatric grand rounds, we are reaching even more pediatric sub-specialists, leading to a wider level of awareness of CPN among clinicians throughout North America. Reactions to NeuroJourney have been overwhelmingly positive, and we continue to be impressed by the creative ways in which clinicians are beginning to implement the tool.

I have found it difficult to find information on the latter stages and decline of [Sanfilippo]. NeuroJourney has been an invaluable source of information that has given me an honest account of what it may look like. NeuroJourney very much reads as if it has been written with involvement from parents as it comes across deeply personal and not shying away from the tougher subjects. - Parent

Why I advocate for Pediatric Palliative Care (from the Champions):

Hope guides me through the darkness.

Palliative care is a team sport.

My career became my child’s health. Nobody should walk this journey alone.

Our treatment goals: Safe, comfortable and loved.

Palliative care balances action and acceptance.

I wasn’t always a cancer mom.

Every parent wants for their child.

Parent Champion Program

While Courageous Parents Network’s growth has been steady over the last 10 years, it has been limited by the size and capacity of the team to advocate among clinicians and patient organizations for the family experience and palliative care. That changed in 2023, when CPN welcomed its first class of six Parent Champions. Representing different regions of the country and families with different diagnoses, the six mothers (yes, we wanted fathers but alas none applied) attended an intensive three-day training in Boston. Since then, each Champion has been working with a CPN mentor to present to clinician and patient organizations, contribute to blogs and, in some cases, participate in podcasts. The Parent Champion program is funded through a grant from Sanofi and the Kanarek Family Foundation, allowing CPN to offer each Champion a financial stipend.

I am connecting with and learning from people all over the world. It is no longer the story of my son and family alone that I share – it is the many stories and resources that CPN has collected over the last decade. It is an honor to represent CPN and I have no doubt that we are making a meaningful impact.

– Lindsey Topping, Mother of Owen

Our Parent Champions

Lindsey and Ashley at NeoFest

In the Room Topics:

I Need a Break!

Dyadic Coping: Managing Caregiving Stress as a Couple

Grieving in Relation to Others

Understanding and Addressing Pediatric Medical Trauma

Storytelling

“Shared Decision-Making” - What Does This Actually Mean and What Does It Look Like?

Be Your Own Best Ally: Self-compassion as a Technique to Fend Off Stress and Burnout and Build Your Capacity to Keep on with the Caring

When it’s Harder than it Should Be: Navigating the Emotional Toll of Your Child’s Feeding Challenges

Normal Broken, A Conversation with Mom and Author Kelly Cervantes

Grounding and Tips to Support a Child’s Understanding of a Serious Diagnosis (in themselves, a sibling, a classmate etc.)

More Than We Expected: A Conversation with Father and Author James Robinson

In The Room

In 2023, CPN continued hosting our live-streamed “In the Room” events on pressing issues for parents and the clinicians who care for families of children with serious medical conditions. Some of the issues are niche (e.g., Understanding and Addressing Pediatric Medical Trauma) and some apply to many (e.g., Storytelling). 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 2023, more than 900 people registered for eleven programs, including two conversations with authors. These In the Room events were made possible with grants from Sanofi, Astellas, RegenxBio, BioMarin, Amicus Therapeutics, and bluebird bio.

AAP Liaison

Courageous Parents Network has formalized our relationship with the American Academy of Pediatrics Section on Hospice and Palliative Medicine (AAP SOHPM). Effective January 2024, a CPN representative serves as an official liaison to the Executive Committee of the AAP SOHPM.

The vision of the AAP SOHPM is that “seriously ill infants and children and their families will have their suffering attended to with compassion and expertise.” The liaison term is a two-year appointment through which CPN offers expertise on family and caregiver experiences related to accessing and navigating pediatric palliative care. The liaison participates in monthly meetings with the Executive Committee; provides input to publications produced and/or reviewed by the AAP SOHPM; and ensures that relevant CPN resources are shared to pediatric palliative care providers nationwide through AAP SOHPM communication channels.

Brian, Casey, Freddy & Bethie

DEIB Programming

While the psycho-social and emotional needs of parents caring for children with serious medical conditions are shared across race and culture, research has made abundantly clear that systemic racism adds additional layers of grief, trauma and complexity onto families of color. Generous funding from an anonymous donor has allowed CPN to bring an intentional focus to that lived experience. This generosity has enabled us to study the issues with the support of facilitators, and to bring more voices of families and clinicians of color to our network, in stories told and perspectives offered.

A gratifying development has been the integration of our parent voices into medical education. Dr. Amy Trowbridge, a pediatric palliative care physician and educator in Seattle, Washington harnesses CPN’s new videos in her innovative curriculum to advance culturally-responsive communication. She writes:

“[The] incredible series on Unconscious Bias in Medicine has been an invaluable addition to [my] work. [The videos] have served as a set of “advisors” as I developed the curriculum … Through this collaboration, hundreds of healthcare clinicians (most of whom do not practice palliative care and may not otherwise have heard of CPN) will listen to these parents’ stories, and then learn a set of specific communication skills they can immediately take into their practice … I am immensely grateful to Courageous Parents Network, and everyone who donates to their work, for creating this honest, rich, and critically important body of work.”

This is a start, with more to come as we continue to seek authentic ways to be a trusted, helpful resource for any family or clinician navigating the illness journey.

Preview one of the educational modules, go to: https://bit.ly/WhatMattersModule

“I am immensely grateful to Courageous Parents Network, and everyone who donates to their work, for creating this honest, rich, and critically important body of work.”

Sarita and Kareem with their family

Team CPN

By the Numbers

2023 REVENUE $604,425

2023 EXPENSES $141,789 ADMIN/STRATEGY

$653,795 PROGRAMMING: CLINICIAN OUTREACH, CAREGIVER CONTENT & OUTREACH

Visitors to CourageousParentsNetwork.org

We are so thankful that, because of our generous donors, many of CPN’s resources are available 24/7 on our website at no cost to families or clinicians. In 2023, 64,320 unique individuals visited the site. There were 184,096 page views, and 441,513 video views. Membership in the Network rose to 4,023 family members and 3,082 clinician members.

Sought-after Expertise and Perspective

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 2023, CPN spoke to more than 2,000 clinicians and affected family members in patient groups. Our team also regularly contributes and/or co-authors articles and studies for important publications in the field.

CPN continues to be invited to contribute to research and quality improvement projects, including on sibling needs, transitioning children with medical complexity from inpatient rehabilitation programs to home, continuity of care in the Pediatric Intensive Care Unit (PICU), and advancing neuro-palliative care.

The O’Leary Brothers

The Raman Family Colson and his Mom

A Mother’s Appreciation

Several years ago our daughter Claire’s orthopedic doctor recommended she have spine surgery. We were very wary and wanted to research whether surgery was the right choice for her. We got a second opinion, and Claire’s palliative team also mentioned the Courageous Parents Network website. This website was very helpful in our learning about spine surgery and helped us in our difficult decision for our daughter.

Along with being very helpful with spine surgery info, the Courageous Parents Network has given us many other insights into the care and decision-making and difficulties of raising a severely disabled child. We have other special needs support groups that can be helpful, but none of them discuss the life-threatening severe disability issues that our daughter has like Courageous Parents Network does. Thank you!

– Katherine Wallace

Looking Ahead to 2024

At 10 years, Courageous Parents Network has had the honor and privilege of connecting with thousands of caregivers and clinicians caring for children with serious medical conditions. They continue to inspire and humble us with their commitment to learning, sharing, and aspiring to be and do the best they can. CPN’s tenth year will be devoted to celebrating them—and all we have learned as we journey with them.

The Wallace Family

Matthew, Havi, and Myra

Board Members

Eric Bartholomae

CFO and EVP at Wolters Kluwer Tax and Accounting

Rob Go

Co-Founder and Partner, NextView

Terry Flotte, MD Dean, UMass Medical School

Diane Meier, MD Director Emeritus, Center to Advance Palliative Care (CAPC)

Myra Sack Parent; Founder, E-motion

Jonathan Sands Engagement Manager, McKinsey and Company

Bob Searle

CPN Board Chair Partner, The Bridgespan Group

Kate Tighe

VP, Head, US Public Affairs & Patient Advocacy – Immunology, Sanofi

Kendra Wilde

Founder, Host, Wild Peace for Parents, A Little Easier podcast series

Mission

To orient and empower parents and others caring for children with a serious medical condition, 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 resourcesand programming to help caregivers and others caring for children with a serious medical condition to navigate the illness journey with support and a sense of community. At the center of CPN are parent and clinician voices that illuminate and share the lived family experience, focusing on social, functional, and emotional needs and the positive impact of “palliative-aware” practices, regardless of diagnosis and without bias.

CPN resources include video and podcast interviews, educational guides and learning pathways, parent-generated blogs, and a clinician portal offering materials for use in self-and colleague education. CPN’s programming includes a robust social media presence, monthly educational webinars and newsletters and both live and virtual presentations to clinician audiences, biotech leaders, and patient organizations. CPN partners with others to bring the family perspective to clinical research and a wide range of communication (or media) outlets.

Joey and his parents

The American Academy of Pediatrics would like to express its sincere congratulations to Courageous Parents Network on its tenth anniversary and recognize the important contributions of CPN to the AAP. CPN’s partnership in the development of educational resources, policy, and integrating the invaluable perspective of families/caregivers into AAP pediatric palliative care activities helps to further the AAP mission, vision, and support quality of life and well-being for families across the country.

Benjamin D Hoffman, MD, FAAP President American Academy of Pediatrics

©2024 Courageous Parents Network, Inc. All rights reserved.