2024 Annual Report
“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.”
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.
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 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 come in many forms: sharing their stories; co-authoring articles and guides; writing blog posts; leading live discussions on a wide range of sensitive topics; (co)presenting to pediatric providers and patient groups; and contributing 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
Blyth with her daughter Cameron
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 Road Race Fundraiser
About Courageous Parents Network
Courageous Parents Network (CPN) is a nonprofit 501(c)(3) organization that 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.
At the heart 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 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 to clinical research and a wide range of communication (or media) outlets.
For more than a decade Courageous Parents Network, a nonprofit organization, has oriented, equipped and empowered those caring for children with serious illness.
Vision
Parents and others caring for children with serious illness have confidence that they are doing the very best they can for the child and family.
Aspiration
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.
The Stevens Family
Voices from the Network
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.
Dr. Henner & Kate
Tikvah & Clinician
Andalyn & Clinician
Clinician Emma Murray
Barbara Swoyer, Parent of Jake, Contributing Parent and Donor
I was fortunate to be introduced to Blyth Lord in 2013, as she was conceptualizing what would later become Courageous Parents Network. A palliative care nurse brought us together, but an instant connection, deep respect, and a mutual passion for sharing our lived experience is what has kept our friendship and collaboration strong for over a decade.
Like many others parenting a child with serious, life-limiting illness, I have to choose where to focus my time and effort. My choices may vary over time— but when it comes to CPN, I have never wavered. I am both a supporter and a content contributor, and I know firsthand the value that CPN brings to the table. It’s the qualities that make CPN unique: a strong collaboration with both parents and providers, resulting in reliable, credible content that allows each to learn from the other. A flexible platform, accessible to all and non-disease specific, that offers support in a variety of modalities to parents and caregivers on every part of their child’s journey, from birth and diagnosis to end of life and
beyond. A willingness to explore and include the seldom discussed, difficult topics that parents wonder about but don’t know where to turn to for information.
In the span of a decade, CPN has become a trusted, well-respected, credible, comprehensive resource for parents, providers and hospitals. The organization continues to demonstrate that the value and power of parents sharing their lived experience coupled with the guidance and wisdom of providers cannot be overstated. For this, CPN’s hard-earned recognition is well deserved.
The fabric of Courageous Parents Network is a strong, tight weave of parent caregivers, bereaved parents, friends, families, providers and donors. Most of us have been brought together through a shared experience of grief, loss, struggle and pain. Together we exemplify love, courage, compassion, community and connection, and commitment to making our shared experience a little bit better for all. May this most beautiful legacy—the first ten years—continue to guide, support and empower parents on our shared journey of courage and caring.
Barbara and her son Jake
Ashley Waddell Tingstad, Parent of Viggo and 2024 Parent Champion
My son Viggo died at six months of age from a severe genetic condition. A year later, I had the opportunity to join the inaugural group of Parent Champions [see page 11] at Courageous Parents Network.
I had a story—many stories—to tell, both for other parents who found themselves in the excruciating role of parenting a severely ill child, and for clinicians who play a central role in the patient and family journey. I needed to tell my story to both to share all I had learned in the crucible so that other families wouldn’t feel so alone, and to honor my son’s life and legacy.
CPN truly empowered me to turn my story into advocacy. Through the Parent Champion program the organization provided me with professional training, a team of mentors and peers to learn from, and opportunities to serve. As a Parent Champion, I have shared my experience at NeoFest at Cincinnati Children’s Hospital, at the Ronald McDonald House annual conference in Chicago, and at the American
Academy of Pediatrics (AAP) National Conference in Orlando. I have published blogs and I am co-author with physicians on a Perspectives piece for a medical journal.
This experience has been life-changing and life-affirming for me. It has been the beginning and the launch pad. I recently was invited by a physician I met at the AAP conference to be a panelist at the Health Care Ethics Consortium at Emory University. I also serve on a local Pediatric Palliative Care Board in Michigan. These speaking and writing and service opportunities have given me a seat at the table, to be part of the robust conversation about how to improve care for seriously ill children and their families, and how to support them through each stage of a full life that includes death and bereavement.
I have received so much feedback about the power of my stor(ies), how hearing about our family’s journey with Viggo has inspired clinicians to make small but meaningful shifts in their practice. My fervent prayer is that such shifts will improve the lives of children and families in their care.
Ashley with her family
Julie Hauer, MD, Seven Hills Pediatric Center and Boston Children’s Hospital, Co-Author and Reviewer, NeuroJourney
As a clinician, I seek to improve problems and to consider when improvement is less or not likely to occur. I see myself as a partner with my patient families, offering information while trying at all times to be sensitive to how that information is likely to be received and processed.
When Courageous Parents Network approached me with the NeuroJourney concept I immediately saw how much we could jointly contribute to the field. Through NeuroJourney we could bring challenging content to families in a format that would allow them to explore, either reading or listening. We could grant parents time to process the information at a pace that makes sense 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.
“I am often asked to speak on complex topics that are relevant to caring for children... I always highlight NeuroJourney in these presentations—not just because the content is so useful, but also because it represents the power of the parent-clinician relationship.”
I am often asked to speak on complex topics that are relevant to caring for children with impairment of the nervous system. I always highlight NeuroJourney in these presentations—not just because the content is so useful, but also because it represents the power of the parent-clinician relationship. Patient families describe to me and my colleagues how NeuroJourney content helps them form questions to bring back to their child’s medical team. This complementary and iterative process is what gives parents agency when considering their child’s circumstance, which includes confronting problems without easy answers.
Prior to NeuroJourney clinicians really had no tool to support the anticipatory guidance that parents want and need. And now we do.
Julie Hauer, MD
More Voices
“Just knowing a community is available that is based on work with true health professionals allows you the peace of knowing that you are not going down an Internet ‘rabbit hole.’”
- Parent
“I couldn’t believe it! Here were other families thinking the same things I felt in the hospital. Here were the resources I didn’t even know I needed. Here were stories of families with other very sick children and of parents like me. Here my family belonged.”
– Parent
“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.”
- 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
“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 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
“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, patient groups and industry as a trusted authority and thought leader-partner representing the lived experience and needs of families caring for a child with a serious medical condition. We value these relationships for the ability to extend the reach of CPN resources. We also are deeply grateful for the partnerships, especially those with rare disease biotech companies, that provide essential funding for CPN’s outreach activities.
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.
“Thank you for sharing your stories and experiences to help us better care for and communicate with our families.”
during their child’s illness. Then, in December, Chrissy was joined by parents Lindsey Topping, Naomi Williams, Caroline Menzia and Amy Graver to present a webinar on communicating with parents of children with medical complexity.
Stanford Medicine
CPN works with the Quality of Life and Pediatric Palliative Care team (QoLa Program) at Stanford Medicine under the leadership of Dr. Claire Wakefield to explore clinician 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 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 also presented at the RMHC International Conference in July, 2024, where they discussed how Ronald McDonald House staff and volunteers, in their vital role as support to families, can empower the caregivers who stay with them
• CPN families have been featured in a standing Parent Column in the SOHPM quarterly Perspectives publication, which reaches approximately 1,700 individuals through the SOHPM listserv for clinicians and other affiliated providers.
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
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.
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.
Looking Ahead to 2025
“I met a young adult with severe neurologic injury whose mother shared ‘I just want someone to tell me where we’re headed.’ NeuroJourney was new and clearly the right resource. I gave some preamble in our clinic visit and sent it as a follow-up message. She called our office within four hours, crying, saying, ‘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
Building a New Digital Platform To Serve Our Community
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 journey and information and guidance to anticipate what lies ahead. As always, the content will reflect CPN’s compassionate, agnostic, and palliative-aware voice to meet the needs of our diverse community.
NeuroJourney
NeuroJourney in More Languages
With 21.6% of US families speaking a language other than English at home, we are committed to expanding NeuroJourney’s reach. French is now available in both written and audio formats with support from Sanofi, Division of Quality of Life and Pediatric Palliative Care, 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.
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
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 unique visitors to CourageousParentsNetwork.org
140,132 page views on CourageousParentsNetwork.org
210,580 video views CourageousParentsNetwork.org
“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
4,400 family members
3,876 clinician members
37,000 clinicians and parents reached in live presentations and grand rounds
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
Board Members
Eric Bartholomae
Former EVP Finance, Wolters Kluwer
Amy Brin
Principal, Amy Brin Consulting, LLC
Lee Cohen
Former Managing Director, Wellington Management
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
Bob Searle, 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
Kate Tighe
“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.”
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.
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 years as the Board Chair. I have watched the talented team expand the original understanding of CPN as a digital tool, to that of an organization that educates both families and clinicians. An organization that constantly innovates, producing initiatives like In the Room and NeuroJourney and the Parent Champions program to reach more people and give further support.
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 must grow to meet its strategic needs. In 2025 we are welcoming seven new Board members who bring critical skills and experiences required to support the next phase of our journey. And after eight years of board service, I am 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
Bob and Norah
