Social media has transformed how families navigate complex medical journeys, creating unprecedented opportunities for connection, information sharing, and support. For parents of children with medical complexity and rare conditions, online platforms can offer vital lifelines to communities who understand their unique challenges. Yet these same spaces also present risks that deserve careful consideration. This webinar, features Dr. Karen Low and a panel of parents, exploring the multifaceted relationship between social media and families managing complex pediatric health conditions. 

Learning objectives:

1. Describe how parents of children with medical complexity and rare conditions engage with social media.
2. Identify potential risks of sharing information on social media.
3. Name potential benefits of seeking support through social media.

Conflict often emerges when navigating the medical, emotional, and relational complexities of caring for medically complex children. This session examines why conflict happens, how it escalates or de-escalates, and introduces practical approaches for transforming conflict in ways that preserve relationships, honor diverse perspectives, and center what matters most.

Learning objectives:

1. Identify common sources of conflict when caring for medically complex children, including differences in values, goals, communication patterns, and perspective. 
2. Recognize the dynamics that escalate or de-escalate conflict, including the role of power, trust, communication dynamics, and emotion. 
3. Explore approaches for navigating conflict in ways that honor relationships, create space for difficult conversations, and focus on what matters most.

This webinar is jointly hosted by Courageous Parents Network and the Coalition Against Childhood Cancer.

Adolescents and Young Adults (AYA) with cancer have gained important recognition in recent years as a group with distinct psychosocial needs. Cancer affects this age group in unique ways, hitting during a crucial time when they’re figuring out who they are, becoming more independent, and reaching other major life milestones. It makes sense, then, that parents and caregivers of these young people would also face their own unique challenges as they support their child and figure out how to balance being a loving parent with being a partner in their care.

In the event pediatric psychologists, Dr. Joan Hanania and Dr. Chrissy Salley, are joined by a panel of experienced parents who discuss this topic and ways in which parents cope.

Feelings of guilt and regret, including the anticipation of those emotions, are natural for all parents. However, they are particularly prevalent for those caring for children living with medical complexity. The stakes are high. Parents feel pressure to get it right – from making potentially life-saving medical decisions to ensuring that their child’s quality of life is as good as it can be to juggling the needs of the entire family.

In this webinar, Dr. Chrissy Salley, a pediatric psychologist, describes common sources of guilt and regret. Borrowing from Cognitive Behavioral Therapy and the science of caregiving, she teaches attendees strategies they can employ to manage feelings of guilt and regret throughout the caregiving journey.

Learning objectives:

1. Describe common sources of guilt and regret for parent caregivers.
2. Explain how strategies from Cognitive Behavioral Therapy, an evidenced-based mental health intervention, can be applied by parent caregivers to mitigate feelings of guilt and regret.
3. Name two strategies that clinicians can employ to support caregivers in mitigating guilt and regret.

Receiving a genetic diagnosis (or lacking a diagnosis)  for a child can be a profoundly life-altering experience for families. In this session, Mary-Frances draws on her extensive experience working with parents and caregivers to explore the complex emotional responses that emerge as families learn to live with a diagnosis or uncertainty and build their “new normal.” Do families truly accept the diagnosis, or do they adjust without full acceptance? Can both coexist? In this session, Mary-Frances is joined by a panel of parents who delve into the realities of accepting versus adjusting while navigating the challenges of their child’s medical complexity.

Learning objectives:

1. Differentiate between emotional adjustment and acceptance in the context of a child’s genetic diagnosis.
2. Discuss the varied emotional responses and coping strategies parents may experience over time.
3. Describe how a genetic diagnosis can be understood as one aspect of a child’s identity, rather than a defining characteristic.
4. Identify at least two ways that clinicians can support families in light of a genetic diagnosis.

Genetic testing can play a powerful role in helping families find answers about their child’s health. In this session, Jessica walks you through the different types of genetic tests, what they can (and can’t) tell you, and how they’re used to diagnose a wide range of conditions. She also talks about how re-checking genetic data over time can lead to new insights and better outcomes. Finally, she talks about how ongoing efforts are making genetic testing more available and more useful for families from all backgrounds.

Chaplain and researcher Amanda Borchik, MDiv, BCC presents on the ways children express their unique spirituality and discusses ways that we as parents, caregivers and clinicians can nurture their spirit. Participating in the discussion sharing their lived experience are two parents – Robin Kanarek and Jeanette Quiles-Vigorito.

Learning objectives:

1. Gain an understanding of the ways children express their unique spirituality
2. Identify ways that parents and caregivers can nurture the child’s spirit
3. Identify ways that clinicians can nurture the child’s spirit

For families of children who had or are living with a serious illness, the holiday season can be a mixed bag—one filled with joy, comfort, and love, but often also anxiety, sadness, and isolation. Holidays can intensify emotions, highlight the passage of time, and remind us of what was or what might never be, making even cherished traditions feel bittersweet. At the same time, they can offer opportunities for connection, reflection, and new ways of finding peace or joy through adapted rituals and shared experiences. 

Anticipating the holidays often brings its own emotional weight, but through honest conversation and mutual support, families can prepare for and navigate the season with greater understanding.

In this In the Room, members of the Network participate in a moderated discussion on the complex emotions that accompany significant days, discuss strategies for coping, and talk about the power of ritual and connection during the holiday season.

Learning objectives:

1. Recognize the unique emotional challenges holidays pose for families of children with serious illnesses.
2. Identify common triggers and pressures that may arise around holidays and special days.
3. Explore strategies for coping with emotional intensity, grief, and uncertainty during the season.
4. Discover how rituals—new or adapted—can offer comfort, meaning, or distraction.
5. Connect with others who share similar experiences, and learn ways to create space for both joy and sorrow during the holidays.

This is a conversation with Dr. Tasha Faruqui, whose new book Keep Your Head Up is a testament to the depth of familial love and our ability to endure in the face of childhood terminal illness. When author and pediatrician Dr. Tasha Faruqui gave birth to her second daughter, Soraya, she knew immediately that something was wrong. Yet as years passed and every medical test for Soraya came back normal or inconclusive, Tasha began to realize that science doesn’t always have the answers, and there are some issues in life that simply cannot be fixed. Yet, we can continue to find happy moments and celebrate the beauty of what we have.

This story gives a voice to parents and loved ones of terminally ill children, illuminating the way to comfort, community, and unbreakable hope. This book discusses terminal pediatric illness — and its impact on the family, especially the siblings and the child herself — with raw honesty. It demonstrates how families can provide transparency to life-limited children around a terminal diagnosis, comfort them when they are afraid of what comes next, and continue to embrace life despite ongoing challenges.

Children have unique medical, emotional, and developmental needs during disasters, and preparing to meet those needs is essential for effective response and recovery. This is even truer for children with a serious medical condition.

This event provides a platform for learning and sharing best practices to create an actionable plan that prioritizes the safety and care of children in times of crisis. And includes action items you can take now as the caregiver to make sure you are always prepared for the unexpected.

Learning objectives:

1. Gain an understanding of what families of children with complex medical needs face each day in managing care.
2. Identify resources and support mechanisms that are essential for equipping families of children with medical complexity to effectively prepare for, navigate during, and recover after disasters.