Hope for HIE families, researchers, clinicians, and advocates from around the world came together, online and in-person, for the 2026 Family & Community Conference, held April 24–26 at the Hyatt Regency Boston. Themed around connection, support, and science, the hybrid event welcomed the full spectrum of the HIE community — from newly diagnosed families and seasoned advocates to leading neonatologists and neurologists — creating a rare and powerful space where lived experience and cutting-edge research share the same stage.
Over three days, attendees gathered to learn from world-class scientists pushing the boundaries of HIE research, to find support from Hope for HIE's social worker and child life specialist and fellow parents who truly understand the journey, and to celebrate the resilience of a community that continues to show up for one another.
Whether attendees came for the science, the solidarity, or simply to be in a room full of people who get it, the 2026 conference was a testament to what becomes possible when a community comes together — united by hope, driven by purpose, and refusing to navigate Holland alone.
Friday night kicked off the conference with a community celebration! Mike Medved, an accomplished singer/songwriter and HIE dad shared his talents with a musical performance.
Flamenco artist and HIE parent Laura Sánchez also took the stage on Friday evening, with a deeply personal performance titled "Welcome to Holland!?" — a pointed reimagining of the well-known poem that has sparked debate within the disability community.
Through movement and spoken word, Laura wove together the beauty and the sometimes hard reality of raising a child with HIE and disabilities. She reflected on learning not to take anything for granted, that basic human functions like seeing, hearing, eating, and communicating require hours of daily therapy, while also pushing back against the language of "special needs," asserting that these are simply human needs and human rights.
Laura spoke candidly about living in near-constant fight-or-flight, questioning her own worth and identity, and struggling to balance caregiving with her lifelong dream of being a flamenco artist. She paid tribute to her husband, her supporters, and the broader community of parents and therapists who meet children where they are.
Ultimately, the performance was a call for collective care — an acknowledgment that no one navigates Holland alone, and ended with Laura inviting the entire audience, from their chairs and wheelchairs alike, to move together in solidarity.
Executive Director Betsy Pilon opened the conference with a welcome that was personal and purposeful. As an HIE mom herself, Betsy understands firsthand what families navigate — the isolation, the uncertainty, and the strength it takes to keep going.
She reflected on how far the community has come, growing from a small Facebook group into a global network focused on advocacy, awareness, education, research, and support.
Her message was clear: when families, scientists, and community show up together, real change happens.
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One of the most anticipated sessions featured two members of our Medical Advisory Board sharing the latest in HIE research. Dr. Eric Peeples, neonatologist and Associate Professor at the University of Nebraska Medical Center, and Dr. Danielle Guez Barber, pediatric neurologist, Assistant Professor at the University of Colorado, Principal Investigator of the HIE Registry — and an HIE mom herself — gave an honest, grounded look at where the science stands today.
They covered how much has changed, from the development of therapeutic hypothermia to growing research on genetics, biomarkers, family experience, and long-term outcomes. They also didn't shy away from what's still unknown and the work that remains.
With families in the room who live those gaps every day, the message was clear: HIE family voices aren't just welcome in research. They're essential to it.
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One of the most thought-provoking sessions of the conference was the Family Priorities interactive voting session, led by Hope for HIE Research Program Manager Maggie Jalowsky and Program Coordinator Allison Moise. The session centered on a powerful premise: that research outcomes for HIE have long been shaped by researchers alone, often capturing only the tip of the iceberg — short-term and motor outcomes — while the full weight of the HIE journey remains unmeasured and invisible in the data.
Families were invited to participate in a live voting exercise to help identify which research outcomes matter most to them in daily life, spanning everything from sleep and cognition to emotional wellbeing, caregiver impact, and financial burden. The conversation that followed was candid and rich, with families sharing that priorities vary widely based on their child's severity, their geographic location, their access to care, and whether they're navigating the journey with or without nearby family support.
What emerged was not a tidy ranked list, but something far more valuable: a vivid, honest picture of how complex and deeply personal the HIE experience is — and why centering family voice in research design is not just meaningful, but essential. This session was one piece of a larger effort, with Hope for HIE's developing HIE registry and upcoming surveys working to capture this lived experience data over time and translate it into a research agenda that truly reflects the community it serves.
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This session offered a warm and comprehensive look at the support programs Hope for HIE provides to families at every stage of the HIE experience. Child Life Specialist, Annie Gunning, opened by walking attendees through the heart of child life work — using play, developmentally appropriate education, and emotional coping support to help children and families navigate the fear, uncertainty, and grief that come with a medical diagnosis.
Annie shared practical tools families can use at home, from medical play techniques to prepare children for procedures, to strategies for helping siblings process big feelings and behavioral changes. Her message was clear: grief doesn't solely come with loss — it lives in diagnosis, in change, and in the ongoing weight of a medically complex life, and children and families deserve compassionate, skilled support to move through it.
Social Worker, Jennifer Schaefer, and Social Work Intern, Kimberly Taylor, then shared updates on Hope for HIE's broader support ecosystem, including weekly Zoom support groups, peer support mentorship, and specialized programming for loss families.
Kimberly presented findings from a recent community needs assessment of loss families, revealing that what families crave most is connection, understanding, and resources that adapt as their grief evolves — whether they lost their child days ago or years later.
The session closed with an honest, community-driven conversation about the gaps that still exist, from reaching rural families and underserved populations to ensuring that parents who lost older children feel just as seen and supported as those who experienced infant loss. The overarching message from the entire team was one of deep commitment: Hope for HIE's support programs are not built for the community — they are built with the community, shaped by listening, and always evolving to meet families where they are.
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The Saturday afternoon program took a beautiful, intentional pause for creativity and connection with a tulip art-making workshop led by geometric paper artist Dani Tedesco, introduced by flamenco artist and HIE parent Laura Sánchez. More than just a craft activity, the workshop was a meaningful extension of the "Welcome to Holland!?" experience Laura had brought to life the night before — the tulip, a symbol deeply rooted in Dutch imagery, serving as a tangible reminder of the community and beauty that can be found in a life's journey you didn't plan for.
Together, families folded origami tulips from scratch, guided gently through each crease and fold by Dani, who made the process accessible and joyful for attendees of all ages and skill levels.
The finished tulips echoed the very ones Laura had handed out at the close of her Friday night performance. It was a quiet, but powerful moment woven into the fabric of the weekend: a reminder that art, play, and community are not extras in the HIE journey. They are part of how we heal.
Joining virtually from Texas, Dr. Steven Lazar, child neurologist and Medical Director of the Desmond Program for Fetal-Neonatal Neurodevelopmental Follow-Up at Texas Children’s Hospital, led a practical session on neurocognitive development and long-term follow-up after HIE.
Rather than focusing only on statistics, Dr. Lazar framed follow-up care as an individualized, evolving process that should support the whole child and family — not just track test scores.
He walked families through the why, who, when, how, and what of developmental follow-up programs, while acknowledging that no two programs look the same. He also named an important gap: what clinicians have historically defined as “good” or “poor” outcomes does not always reflect what matters most in daily life after HIE.
A key theme was the need for long-term, relationship-based follow-up that changes as children grow. Some challenges, including executive functioning, attention, learning, and processing differences, may not become clear until school age or later.
HIE follow-up cannot stop at age one or two. Families need care systems that continue to look, listen, and respond as new needs emerge over time.
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Saturday afternoon closed with a collaborative research working session facilitated by Hope for HIE Research Program Manager Maggie Jalowsky.
Families, clinicians, and researchers came together to identify the unanswered questions that matter most across the HIE journey. The session used a modified James Lind Alliance framework, with small groups generating and refining questions around prevention, epilepsy prediction, long-term cognitive outcomes, family mental health, mild HIE, severe motor impact, and the gap between animal studies and human biology.
The questions reflected the complexity of this community:
The goal was not to simply gather feedback. It was to begin building a community-led HIE research agenda.
Historically, Hope for HIE has supported research partnerships that came to us. This session marked an intentional shift toward helping define the questions, priorities, funding opportunities, and collaborations that should move the field forward.
The work does not end with one session. Follow-up surveys, additional workshops, and future prioritization rounds will bring this conversation to the broader HIE community.
Families are not just participants in research.
They are the reason the research exists — and their questions should help drive what science works to answer next.
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The Sunday morning Advocacy Skills Workshop offered a space where HIE families could learn from each other, not just from experts. Led by Hope for HIE Social Worker Jennifer Schaefer, the session opened with an important reframe — that advocacy doesn't have to mean testifying before Congress or leading a public campaign. It starts with knowing your own needs, asking the hard questions in the NICU, and trusting your instincts as a parent.
From there, a panel of three seasoned HIE parents Laura Hébert, David Ford, and Sara Baker Pendleton brought the conversation to life with candid, personal stories spanning the full spectrum of advocacy experience.
Laura Hébert from Canada delivered a moving call to action for caregivers to prioritize themselves — sharing her own journey from survival mode to reclaiming her identity, and challenging every person in the room to recognize that caring for yourself is not a luxury, it's a necessity. David Ford walked families through the nuts and bolts of legislative and policy advocacy, demystifying the process of meeting with elected officials and showing how connecting with aligned organizations can amplify a family's voice far beyond what they could do alone. Sara Baker Pendleton brought IEP navigation and school-based advocacy into focus.
The session closed with an open, honest community conversation — a reminder that in advocacy, as in so much of the HIE journey, we are always stronger together.
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This session was a fitting close to the conference’s family programming.
Facilitated by Hope for HIE Program Coordinator, HIE parent, and peer mentor Allison Moise, the session brought together a parent panel representing different parts of the HIE community: Brigid, navigating the mild-to-moderate spectrum and the invisibility that can come with it; Stephanie, an adoptive parent to a severely impacted five-year-old; and Julie, an HIE mom from Kenya, sharing a global perspective on how different this journey can look depending on where a family lives.
Allison opened with a framework of HIE “coping phenotypes” — patterns many families may recognize as they move through the uncertainty of HIE. The information seeker. The vigilant watcher. The grief dweller. The meaning maker. The present-focused survivor.
The goal was not to put families into categories. It was to name what many parents already know: coping changes over time, families often move in and out of different modes, and there is no one right way to survive the emotional weight of HIE.
The conversation that followed was honest and wide-ranging. Families talked about the unique challengesacross the spectrum of HIE, where some children may look neurotypical to others, where others are navigating secondary diagnoses, others fighting for inclusion and accessibility.
Across different stories, outcomes, and countries, the message was clear: every part of the HIE experience belongs in this community.
No matter where a family falls on the spectrum, what their child’s outcomes look like, or where in the world they are navigating care, they belong here.
And together, those stories make Hope for HIE stronger.
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The 2026 Family & Community Conference reflected what Hope for HIE has always believed: families, clinicians, researchers, and partners make the greatest progress when we are in the same room at the ground level, and seen as equal partners in the work.
Across the weekend, that belief showed up in many ways. Families shared what matters most in daily life after HIE. Researchers and clinicians listened, learned, and contributed their expertise. Parents explored advocacy at the bedside, in schools, in policy conversations, and within their own families. Community members connected across outcomes, ages, geographies, and lived experiences.
This work is not new for Hope for HIE, but it is growing in important ways.
Our community has long helped shape research, education, support, and systems change. What this conference made clear is that the next phase of this work requires even deeper collaboration, clearer priorities, and stronger pathways for family voice to inform what comes next.
The road ahead is still long. There are still more questions than answers. Families still need better follow-up, clearer information, stronger systems, and research that reflects the full HIE experience.
But there is momentum.
Hope for HIE leaves this conference carrying forward a developing registry, a family-centered research agenda, deeper partnerships, and a community committed to building together.
Not because we are just getting started.
Because we know what is possible when connection becomes collective action.
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