CPN 2024 Annual Report

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Annual Report

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Dear Friends and Supporters of CPN, Findings from an independent survey conducted in the Fall of 2024 with Courageous Parents Network constituents allow me to tell you with certainty that families, clinicians, and patient groups caring for children living with serious medical conditions highly value—and some even cherish—CPN. Why? Because they know that if something matters to families, Courageous Parents Network will address it with honesty and care.

Blyth with her daughter Cameron

That this is so is entirely thanks to those who have contributed generously of their time, financial resources, expertise and lived experience: parents, pediatric clinicians, staff and donors. Collectively, this Network is changing

“I dared to hope that individuals touched and

the care experience so that what endures is not the Grief and the Loss but the Hope and the Love.

Contributions to the Network from families, clinicians and the CPN team

impacted by serious

come in many forms: sharing their stories; co-authoring articles and guides;

illness in children would

(co)presenting to pediatric providers and patient groups; and contributing

want to pour their experience, perspective and loving care into an enterprise that just might make others’ journey if not better then at least more tolerable.”

writing blog posts; leading live discussions on a wide range of sensitive topics; to research to advance clinical practice.

Contributions to the Network from donors come in many forms too: small but meaningful amounts from those who responded to the $10 for 10 Years campaign; recurring gifts from loyal supporters; gifts in memory of children and in honor of their grateful and courageous parents; foundations that appreciate the unique role that CPN plays at the intersection of families and pediatric clinicians; clinicians who value CPN for how it educates, illuminates and radiates hope; industry that recognizes the importance of offering anticipatory guidance to families affected by rare disease; and, thankfully, a stream of new donors who sense that it is meaningful to be part of a community of support.

This is what I am most proud of: that I dared to hope that individuals touched and impacted by serious illness in children would want to pour their experience, perspective and loving care into an enterprise that just might make others’ journey if not better then at least more tolerable. That together we might lessen their isolation and despair, and strengthen their sense of agency and confidence.

Please accept my sincere thanks for the role you play in making this hope a reality.

With profound appreciation,

Blyth Lord Founder and Executive Director

The Stevens Family

Team Members

About Courageous Parents Network Courageous Parents Network (CPN) is a nonprofit 501(c)(3) organization that

Blyth Taylor Lord, MEd Founder & Executive Director

provides curated digital resources and programming to help caregivers and others caring for children with a serious medical condition navigate the illness journey with support and a sense of community.

Jennifer Siedman, MEd Director of Community

At the heart of CPN are parent and clinician voices that illuminate and share

Engagement

the lived family experience, focusing on social, functional, and emotional

Chrissy Salley, PhD Director of Clinician Engagement & Outreach

Carol Trager Communications & Marketing

Alison Me Communications &

needs and the positive impact of “palliative-aware” practices, regardless of diagnosis and without bias.

CPN resources include video and podcast interviews and educational guides, 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 also partners with others to bring the family perspective

Development Associate

to clinical research and a wide range of communication (or media) outlets.

Claire Mills

For more than a decade Courageous Parents Network, a nonprofit

Production & Social Media Associate

Bill Parker

organization, has oriented, equipped and empowered those caring for children with serious illness.

Cameraman & Editor

Vision

Zachary Brewer

Parents and others caring for children with serious illness have confidence

Lead Application Developer

that they are doing the very best they can for the child and family.

Devin Rojas

Aspiration

Associate Application Developer

Sarah Casey Manager, Falmouth Road Race Fundraiser

To transform the family and care experience, as it is both delivered and received, so that every parent caring for a child with a serious medical condition feels empowered and equipped to advocate for their child and be the best parent possible.

Courageous Parents Network Annual Report 2024

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Voices from the Network

Barbara with her son Jake

Clinician Emma Murray

Tikvah & Clinician

Dr. Henner & Kate

Andalyn & Clinician

A Decade of Our Shared Journey: Honoring Families, Clinicians, and the Power of Community As we celebrate ten years of Courageous Parents Network—This Shared Journey—we honor families that contribute their perspectives to support others and build community, and clinicians who offer their expertise and commitment while learning from the insights and experiences of families. Through these collaborations, we aspire to build trust and confidence that everyone is working together to do the very best for each child and family.

We proudly present insights from our Network on the following pages.

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www.courageousparentsnetwork.org

Barbara and her son Jake

Barbara Swoyer, Parent of Jake, Contributing Parent and Donor

beyond. A willingness to explore and include the seldom

I was fortunate to be introduced to Blyth Lord in 2013,

don’t know where to turn to for information.

discussed, difficult topics that parents wonder about but

as she was conceptualizing what would later become Courageous Parents Network. A palliative care nurse

In the span of a decade, CPN has become a trusted,

brought us together, but an instant connection, deep

well-respected, credible, comprehensive resource for

respect, and a mutual passion for sharing our lived

parents, providers and hospitals. The organization

experience is what has kept our friendship and

continues to demonstrate that the value and power

collaboration strong for over a decade.

of parents sharing their lived experience coupled with the guidance and wisdom of providers cannot

Like many others parenting a child with serious,

be overstated. For this, CPN’s hard-earned recognition

life-limiting illness, I have to choose where to focus

is well deserved.

my time and effort. My choices may vary over time— but when it comes to CPN, I have never wavered. I am

The fabric of Courageous Parents Network is a strong,

both a supporter and a content contributor, and I know

tight weave of parent caregivers, bereaved parents,

firsthand the value that CPN brings to the table. It’s the

friends, families, providers and donors. Most of us have

qualities that make CPN unique: a strong collaboration

been brought together through a shared experience of

with both parents and providers, resulting in reliable,

grief, loss, struggle and pain. Together we exemplify love,

credible content that allows each to learn from the other.

courage, compassion, community and connection, and

A flexible platform, accessible to all and non-disease

commitment to making our shared experience a little bit

specific, that offers support in a variety of modalities

better for all. May this most beautiful legacy—the first

to parents and caregivers on every part of their child’s

ten years—continue to guide, support and empower

journey, from birth and diagnosis to end of life and

parents on our shared journey of courage and caring.

Courageous Parents Network Annual Report 2024

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Ashley Waddell Tingstad, Parent of Viggo and 2024 Parent Champion

Academy of Pediatrics (AAP) National Conference in

My son Viggo died at six months of age from a severe

physicians on a Perspectives piece for a medical journal.

Orlando. I have published blogs and I am co-author with

genetic condition. A year later, I had the opportunity to join the inaugural group of Parent Champions

This experience has been life-changing and life-affirming

[see page 11] at Courageous Parents Network.

for me. It has been the beginning and the launch pad.

I recently was invited by a physician I met at the AAP

I had a story—many stories—to tell, both for other

conference to be a panelist at the Health Care Ethics

parents who found themselves in the excruciating role

Consortium at Emory University. I also serve on

of parenting a severely ill child, and for clinicians who

a local Pediatric Palliative Care Board in Michigan.

play a central role in the patient and family journey.

These speaking and writing and service opportunities

I needed to tell my story to both to share all I had

have given me a seat at the table, to be part of the

learned in the crucible so that other families wouldn’t

robust conversation about how to improve care for

feel so alone, and to honor my son’s life and legacy.

seriously ill children and their families, and how to support them through each stage of a full life that

CPN truly empowered me to turn my story into advocacy.

includes death and bereavement.

Through the Parent Champion program the organization provided me with professional training, a team of mentors

I have received so much feedback about the power

and peers to learn from, and opportunities to serve. As a

of my stor(ies), how hearing about our family’s journey

Parent Champion, I have shared my experience at NeoFest

with Viggo has inspired clinicians to make small but

at Cincinnati Children’s Hospital, at the Ronald McDonald

meaningful shifts in their practice. My fervent prayer

House annual conference in Chicago, and at the American

is that such shifts will improve the lives of children and families in their care.

Ashley with her family

The Tilley Family

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www.courageousparentsnetwork.org

“I am often asked to speak on complex topics that are relevant to caring for children...

I always highlight NeuroJourney in these

Julie Hauer, MD

presentations—not just because the content is so useful, but also because it represents the power of the parent-clinician relationship.”

Julie Hauer, MD, Seven Hills Pediatric Center and Boston Children’s Hospital, Co-Author and Reviewer, NeuroJourney

relevant to caring for children with impairment of the

As a clinician, I seek to improve problems and to consider

these presentations—not just because the content is

when improvement is less or not likely to occur. I see

so useful, but also because it represents the power of

myself as a partner with my patient families, offering

the parent-clinician relationship. Patient families describe

information while trying at all times to be sensitive to how

to me and my colleagues how NeuroJourney content

that information is likely to be received and processed.

helps them form questions to bring back to their child’s

I am often asked to speak on complex topics that are nervous system. I always highlight NeuroJourney in

medical team. This complementary and iterative process When Courageous Parents Network approached me

is what gives parents agency when considering their

with the NeuroJourney concept I immediately saw how

child’s circumstance, which includes confronting problems

much we could jointly contribute to the field. Through

without easy answers.

NeuroJourney we could bring challenging content to families in a format that would allow them to explore,

Prior to NeuroJourney clinicians really had no tool to

either reading or listening. We could grant parents time

support the anticipatory guidance that parents want

to process the information at a pace that makes sense

and need. And now we do.

to them. And—perhaps as important as anything else— patient families could have the benefit of hearing from other families that had experience with the very challenges that they now were facing.

Courageous Parents Network Annual Report 2024

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More Voices “I couldn’t believe it! Here were “Just knowing a community

other families thinking the

is available that is based

same things I felt in the

on work with true health

hospital. Here were the

professionals allows you

resources I didn’t even know

the peace of knowing that

I needed. Here were stories

you are not going down

of families with other very sick

an Internet ‘rabbit hole.’”

children and of parents like me.

- Parent

Here my family belonged.”

– Parent

“Each story you tell resonates on a personal level, providing me with invaluable insights.

If you ever have the opportunity to give feedback to all of these courageous parents, please let them know that their children’s legacies continue to shape the education and learning experiences of the current

“NeuroJourney has allowed many families that I care for to obtain the anticipatory guidance that they seek, at the speed they want.

Especially for 2-parent households, this can be critically important because both parents may not feel open to the same degree of discussion with their medical team about a future that will likely be hard; at the same time, they don’t want to be left out. Through NeuroJourney, parents can explore topics as desired with the psychological safety of knowing that they can pause at any time and also return as needed.”

and future generations of healthcare professionals.

Their children’s lives mattered, and they, as parents, matter so very much. I am in awe of their courage and their ability to continue to give of themselves in memory of their loved ones.”

– Clinician

- Clinician

“Courageous Parents Network has become a trusted guide for the parents of our sickest, most complex patients.

It has become a resource for clinicians, both as access to parent educational materials and as access to parent voices and concerns. The network has grown into a treasured medical resource borne of deep and mutual understanding.”

– Clinician

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www.courageousparentsnetwork.org

“CPN is unique in that they address what it is like living in the confusion and grief of having a child receiving palliative care. It is sometimes years and years of living like this and friends and family do not understand, and grief groups are for those who have already experienced the death of their child. Doctors are not always comfortable even discussing this.

CPN is unique in its acknowledgement of the stress and emotional burden of caring for a child with a serious medical condition.”

- Parent

Collaborations Courageous Parents Network is recognized by clinicians,

during their child’s illness. Then, in December, Chrissy

patient groups and industry as a trusted authority and

was joined by parents Lindsey Topping, Naomi Williams,

thought leader-partner representing the lived experience

Caroline Menzia and Amy Graver to present a webinar

and needs of families caring for a child with a serious

on communicating with parents of children with

medical condition. We value these relationships for the

medical complexity.

ability to extend the reach of CPN resources. We also are deeply grateful for the partnerships, especially those with

Stanford Medicine

rare disease biotech companies, that provide essential

CPN works with the Quality of Life and Pediatric Palliative

funding for CPN’s outreach activities.

Care team (QoLa Program) at Stanford Medicine under the leadership of Dr. Claire Wakefield to explore clinician

Highlights for 2024 include collaborations with: ®

Ronald McDonald House Charities

2024 brought new opportunities for partnering with Ronald McDonald House Charities (RMHC). In January, CPN Director of Clinician Engagement and Outreach Dr. Chrissy Salley and Parent Champions Emily Callaway and Parvathy Raman presented a webinar on pediatric palliative care to RMHC staff and volunteers.

and parent perspectives on NeuroJourney. Stanford’s forthcoming qualitative research study will result in data to help CPN and clinicians better understand the impact of NeuroJourney in clinical settings, and provide insight into areas of strength and opportunities for improvement.

American Academy of Pediatrics Section on Hospice and Palliative Medicine Courageous Parents Network continues our formal liaison relationship with the American Academy of Pediatrics Section on Hospice and Palliative Medicine (SOHPM).

Liz Morris shares knowledge and perspectives regarding the patient and family experience at monthly Executive

“Thank you for sharing your stories and experiences to help us better care for and communicate with our families.”

Committee meetings and annual planning sessions.

She also serves as a co-author for SOHPM’s updated Pediatric Palliative Care policy statement [in process].

Updates to this statement will provide concrete guidance to all pediatric providers regarding evidence-based approaches to providing palliative informed care.

Further, Liz helps identify parent voices from within the network to offer family expertise to the growing field of pediatric palliative care. Recently, through this liaison relationship: • Ashley Waddell Tingstad presented at the 2024 AAP National Conference & Exhibition on “When Decisions Can’t Be Shared: Supporting Birthing Families through Limited Options.”

Chrissy and Parent Champion Ashley Waddell Tingstad

• CPN families have been featured in a standing

also presented at the RMHC International Conference in

Parent Column in the SOHPM quarterly Perspectives

July, 2024, where they discussed how Ronald McDonald

publication, which reaches approximately 1,700

House staff and volunteers, in their vital role as support to

individuals through the SOHPM listserv for clinicians

families, can empower the caregivers who stay with them

and other affiliated providers.

Courageous Parents Network Annual Report 2024

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2024 Programming Highlights & Updates Courageous Provider Award The Courageous Provider Award annually recognizes clinicians providing exceptional family-centered care in circumstances of serious childhood illness. Nominees must demonstrate excellence in engaging with patients, parents or other caregivers, and/or other pediatric specialists in a holistic, multidisciplinary approach to care. They must demonstrate qualities of compassion, tenacity and empathy in journeying with children and their families.

The 2024 Courageous Provider Award was made possible with funding from the Ilene Beal Charitable Foundation.

Two clinicians were recognized: • Carol May, RN, MSN, MBA, CHPPN, UPMC Children’s Hospital of Pittsburgh • Zeena Audi-Saba, MD Hassenfeld Children’s Hospital, NYU Langone Health

NeuroJourney en Español

In the Room Live-Streamed Events In 2024, CPN hosted eleven live-streamed In the Room events exploring pressing issues faced by parents and the clinicians who support their families. More than 1,000 participants registered for these programs. A special session introduced the faces behind Courageous Parents Network together with parents and providers who reflected on their shared journey in celebration of CPN’s 10 years. In the Room was made possible in 2024 thanks to generous support from Denali Therapeutics.

Courageous Parents Network launched NeuroJourney in Spanish (text and audio). Through this and forthcoming translations, we affirm our commitment to inclusivity and accessibility, ensuring that more families can find community and empowerment along their journey.

Spanish translation was made possible thanks to generous support from Sanofi and Stanford Medicine.

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www.courageousparentsnetwork.org

Looking Ahead to 2025 Building a New Digital Platform To Serve Our Community “I met a young adult with severe neurologic injury whose

A new website, to launch in the Fall of 2025, will present a user-friendly interface that allows caregivers to easily find relevant content for their current stage in the illness

mother shared ‘I just want

journey and information and guidance to anticipate

someone to tell me where

CPN’s compassionate, agnostic, and palliative-aware

we’re headed.’ NeuroJourney

what lies ahead. As always, the content will reflect voice to meet the needs of our diverse community.

was new and clearly the right resource. I gave some preamble in our clinic visit and sent it as a follow-up message.

NeuroJourney NeuroJourney in More Languages With 21.6% of US families speaking a language other than English at home, we are committed to expanding

She called our office within

NeuroJourney’s reach. French is now available in both

four hours, crying, saying,

Division of Quality of Life and Pediatric Palliative Care,

‘Thank you, this is exactly what I was hoping for.’

What I cannot describe in the length of a clinic visit, she was able to explore, finding just what she needed as a loving, advocating parent.”

- Clinician

written and audio formats with support from Sanofi, and Stanford Medicine Children’s Health. In the coming months, NeuroJourney will be made accessible to families that speak Arabic, Chinese, and Portuguese.

These translations are made possible thanks to the support of Alexion Charitable Foundation.

Expanding the Parent Champion Program Building on the success of the inaugural Parent Champion Program in bringing palliative-informed family perspectives to more clinicians and patient organizations, CPN will launch a second cohort in 2025 with support from the Ilene Beal Charitable Foundation. Five new caregivers will refine their personal stories, receive training on how to use CPN resources with clinicians and families, and share their experiences to further expand and strengthen CPN’s reach.

Courageous Parents Network Annual Report 2024

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By the Numbers

2024 REVENUE $402,048

INDIVIDUALS 37%

$202,000

FOUNDATIONS 19%

$59,650

BOARD 6%

$270,813

EVENTS 25% (Falmouth RR, Friends Race, Marathon)

$119,400

CORPORATE 11%

$18,100

EARNED HONORARIA ~2%

$2,286

VIA SOCIAL MEDIA <1%

TOTAL: $1,074,297

2024 EXPENSES $236,639

EVALUATION, STRATEGY, ADMIN 25%

$57,674

FUNDRAISING 9%

$348,252

PROGRAMMING: PARENTS 37%

$308,820

PROGRAMMING: CLINICIANS 32%

TOTAL: $956,865

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www.courageousparentsnetwork.org

Connecting with Families and Clinicians Thanks to the generosity of our donors, CPN’s resources continue to be available free of charge—anytime, anywhere—for families and clinicians through our digital platform. 2024 was our most significant reach to date:

60,500

140,132

210,580

unique visitors to

page views on

video views

CourageousParentsNetwork.org

CourageousParentsNetwork.org

CourageousParentsNetwork.org

4,400

3,876

3,700

family members

clinician members

“The tips that I learned from CPN and shared with parents have a great impact. One parent said the advice helped them make the most of their last days with their child.”

– from the 2024 Clinician survey

clinicians and parents reached in live presentations and grand rounds

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From CPN’s Governance To th CPN Community, I am honored to be leading the Courageous Parents Network Board of Directors as the incoming Board Chair. I have seen firsthand the talent, passion, dedication, fire, and ambition of the CPN team—inclusive of the staff, the board, the beneficiaries, and the supporters.

I know two things to be fundamentally true about the organization: first, it stands firm on a strong foundation built over its first decade; and second, it stands at an inflection point where, if nurtured and championed enough, it has what it takes to be a second-to-none partner for those navigating the sensitive and critical journey of choice-based pediatric care. CPN has been, and must always be, in existence to provide evidence-based support, knowledge, compassion and community.

I look forward to rolling up my sleeves and getting to work!

Kate Tighe Incoming Board Chair

Kate Tighe

Board Members Eric Bartholomae

Myra Sack

Former EVP Finance, Wolters Kluwer

Parent; Founder, E-motion

Amy Brin

Jonathan Sands

Principal, Amy Brin Consulting, LLC

Lee Cohen Former Managing Director,

Bob Searle, Chair Partner, The Bridgespan Group

Wellington Management

Kate Tighe

Terry Flotte, MD

Advocacy – Immunology, Sanofi

Dean, UMass Medical School

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

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www.courageousparentsnetwork.org

VP, Head, US Public Affairs & Patient

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

Dear Friends, As I write these words I am about to turn over the leadership of Courageous Parents Network to a new Board Chair, Kate Tighe. This moment has of course prompted me to reflect on my own journey and what CPN has meant to me.

My own involvement began with an introduction to Blyth Lord in 2014, about two years after the passing of our daughter Nora from cancer. I was struck

by Blyth’s original vision to support families caring for children with serious medical conditions, by allowing them to hear from those who had been down the path before them. I admired her courage (there’s that word), and her ability to channel her own grief into helping other families who were on the same journey.

Bob and Norah

Over the years I have had the privilege of serving CPN in various roles—on the Parent Advisory Committee, the Governing Board, and for the past two

“Ten years is truly an

years as the Board Chair. I have watched the talented team expand the

impressive milestone,

that educates both families and clinicians. An organization that constantly

and as long as there

Parent Champions program to reach more people and give further support.

are families caring for children with a serious medical condition,

original understanding of CPN as a digital tool, to that of an organization innovates, producing initiatives like In the Room and NeuroJourney and the

And, over the years I have seen the power of connection to offer comfort and confidence to parents as they navigate their child’s path, and have come to appreciate the importance of CPN’s voice in advocating for palliative care.

As the organization continues to develop and advance its mission, the Board

CPN will be there to

must grow to meet its strategic needs. In 2025 we are welcoming seven new

support, empower,

the next phase of our journey. And after eight years of board service, I am

and equip them to do their very best for their child and family.”

Board members who bring critical skills and experiences required to support excited to watch from the sidelines as Kate, who has been a champion of CPN since the beginning, leads and guides CPN forward.

Ten years is truly an impressive milestone, and as long as there are families caring for children with a serious medical condition, CPN will be there to support, empower, and equip them to do their very best for their child and family. I hope that you will join me in continuing to support, empower, and equip CPN in this important endeavor.

With gratitude,

Bob Searle Board Chair

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©2024-2025 Courageous Parents Network, Inc. All rights reserved.

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