From July 12–17, children, young adults, parents, caregivers, healthcare professionals, researchers, and industry partners from around the world gathered at Barretstown in County Kildare, Ireland, for the 12th Annual International Children’s Advisory Network Summit.

Since my daughter’s extremely premature birth, my lived experiences as her mother have profoundly shaped how I view my career, my service, and my responsibility to advocate for others—making my work in education and my volunteerism inseparably connected. While improving the educational experiences of thousands of students in a large school district is work that I deeply love, being an integral part of iCAN offers a uniquely personal and cup-filling opportunity to support children and families around the world and help improve both their healthcare and social-emotional experiences.

The theme of this year’s summit—“Mapping Change in Pediatrics Together”—beautifully reflected the spirit of the week. The camp-style setting created an environment where participants could learn, collaborate, build relationships, and enjoy meaningful experiences together. Educational sessions were balanced with poster presentations, shared meals, camp activities, an excursion, and opportunities for informal conversations that allowed genuine connections to form.

Elevating the Voices of Children and Families

The mission of iCAN is to foster a greater global understanding of the importance of pediatric patient and caregiver voices in healthcare, clinical trials, and research. Its members include children and young people who are medically complex, live with chronic or rare diseases, have participated in clinical research, or are simply passionate about improving pediatric healthcare. iCAN provides them with opportunities to share their experiences with researchers, healthcare professionals, industry representatives, regulators, and others who can influence the future of medicine.

The 2026 Summit brought that mission to life. Young people were not simply present; they were leaders, presenters, collaborators, researchers, designers, and experts. Their perspectives shaped conversations about clinical-trial participation, transitions from pediatric to adult care, patient-friendly trial-result summaries, comfort during medical procedures, recruitment strategies, healthcare innovation, and the development of products and services intended for children.

Sessions throughout the week invited young people and parents to respond directly to the professionals designing research studies, treatments, educational materials, and healthcare experiences. Participants discussed what builds trust, what causes anxiety, what makes information understandable, and what helps children and families feel respected and supported.

Creating a Space for Parents and Caregivers

As Co-Chair of iCAN Parents, I was honored to facilitate three parent sessions alongside Dr. Mitch Goldstein, Professor of Pediatrics at Children’s Hospital Los Angeles. These adult parallel sessions were held across three days of the summit and created dedicated space for parents and caregivers to speak honestly, listen to one another, and recognize the value of their collective experiences.

Parents of children who are medically fragile or living with rare and chronic diseases often carry responsibilities that are difficult for others to fully understand. Their lives may include long hospitalizations, complex medical procedures, difficult diagnoses, clinical trials, medication schedules, medical equipment, insurance challenges, educational concerns, and the constant need to advocate for their children.

During our sessions, parents shared not only the logistical challenges of navigating complicated healthcare systems, but also the emotional realities of these journeys. We discussed fear, exhaustion, uncertainty, isolation, resilience, hope, and the importance of finding people who understand without needing a lengthy explanation.

We also focused on siblings, whose experiences can sometimes be overlooked when one child requires extensive medical care. Siblings may experience fear, confusion, disrupted routines, separation from their parents, or complicated feelings about the attention their brother or sister receives. They need honest, age-appropriate information and reassurance that their experiences and emotions matter, too.

One of the most meaningful parts of these sessions was simply being together. Parents connected across diagnoses, countries, cultures, and healthcare systems. Although each family’s story was different, many of the emotions and challenges were remarkably similar. That shared understanding created a sense of community, validation, and belonging.

Turning Lived Experience into a Resource for Others

Our ultimate goal is to transform the knowledge shared during these sessions into a comprehensive, chapter-based digital resource for parents, caregivers, and siblings.

The resource will be designed to support families whose children:

• Are medically fragile or medically complex.
• Live with a chronic or rare disease.
• Experience prolonged or recurring hospitalizations.
• Undergo extensive medical procedures.
• Participate in clinical trials or other forms of medical research.

Each chapter will address a different part of the family journey. Topics may include understanding the healthcare team, preparing for hospital stays and medical procedures, communicating with professionals, participating in clinical research, advocating for a child, caring for siblings, managing day-to-day family life, supporting emotional well-being, and finding trusted communities and resources.

Most importantly, the resource will be shaped by families who have lived these experiences. It will not be a collection of abstract recommendations. It will offer practical guidance, personal insight, encouragement, and the kind of information many parents wish someone had shared with them at the beginning of their journeys.

What began as an idea for a book is growing into an accessible digital resource with multiple chapters that can continue to evolve as additional parents, siblings, and caregivers contribute their experiences. Our hope is that families will be able to access the information they need, when they need it, and feel less alone during some of the most difficult moments of their lives.

Learning, Connection, and Joy

The summit was not defined only by serious conversations. It was also filled with laughter, friendship, creativity, celebration, and adventure.

Barretstown provided an extraordinary setting where participants could take part in inclusive camp activities, including archery, horseback riding, canoeing, high ropes, and creative experiences tailored to attendees’ mobility needs. The summit also included an Irish-themed welcome celebration, poster sessions, collaborative projects, a Dublin excursion, youth presentations, and a concluding celebration. This celebration was quite fun, and our group was treated to a local Irish band made up of all teenagers- which was fitting- and they were amazing!

This combination of meaningful work and shared joy was especially powerful. Children and families who are often brought together by difficult medical circumstances had the opportunity to build friendships, try new experiences, celebrate their strengths, and create memories that extended far beyond hospitals, diagnoses, and treatments.

Moving Forward Together

I am deeply honored to have the opportunity to do this work. It fills my cup to know that I am supporting parents and families, helping them recognize the value of their voices, and creating something that may make another family’s journey feel a little less overwhelming and a little less lonely.

The 2026 iCAN Summit reminded us that meaningful change in pediatric healthcare cannot occur without listening to the people most directly affected by it. Children, young adults, parents, caregivers, and siblings possess knowledge that cannot be found in a textbook or clinical protocol. Their lived experiences must help guide the future of healthcare, research, clinical trials, and family support.

Thank you to our sponsors: Barretstown, Pfizer, Norvartis, BioCryst, Eli Lilly, Shriners Children’s Hospital, Prolacta BioScience, and more. This work would not be possible without your support.

When we create space for those experiences to be heard—and then turn what we learn into action—we truly can map change in pediatrics together.