Hope for HIE was honored to participate in the 2026 International Newborn Brain Conference (INBBC)—a global gathering of clinicians, researchers, industry partners, and advocates committed to improving outcomes in neonatal brain injury.
It was deeply meaningful to have such extensive representation from Hope for HIE's staff, Board of Directors and Medical Advisory Board—including Dr. Danielle Barber (Board of Directors & Medical Advisory Board), Dr. Mohamed El-Dib, Dr. Alexa Craig, Dr. Adam Numis, Dr. Renee Shellhaas, Kathi Randall, Dr. Lina Chalak, and Dr. Hannah Glass—all of whom continue to shape the science, care standards, and future therapeutic landscape for infants with hypoxic ischemic encephalopathy (HIE) and related conditions.
Danielle Guez Barber, MD, PhD & Betsy Pilon
In our hybrid workshop, Communicating Uncertainty in HIE, we tackled one of the most difficult and important aspects of neonatal care: how to name HIE clearly while holding space for uncertainty.
We explored:
We also shared Hope for HIE’s work mapping coping phenotypes and stages of the HIE journey—from crash landing in the NICU through long-term integration and advocacy.
One of the most powerful takeaways:
Uncertainty is uncomfortable for everyone—but false certainty in either direction (downplaying or catastrophizing) can be harmful to families.
If new challenges emerge years later, it does not mean something was missed or done wrong. HIE is complex, and long-term data remain limited.
Alexa Craig, MD, MS, MSc & Betsy Pilon
In this session, we reframed resource connection as an evidence-based, neuroprotective intervention.
We addressed common myths clinicians carry, including:
“Online communities will scare families.”
“If I’m honest about uncertainty, I’ll increase parents’ anxiety.”
“Giving too much information will overwhelm families.”
“Resources are only for severe diagnoses.”
We emphasized that:
Connecting families to credible resources early supports coping, shared decision-making, and long-term adjustment.
The message was simple:
Resource connection is not an afterthought. It is a key part of trauma-informed and family-centered care.
Hope for HIE × Critical Path Institute
Hope for HIE also presented work through the Neonatal Brain Injury Collaborative (NBIC)—a global, pre-competitive public-private partnership coordinated by Critical Path Institute and Hope for HIE
NBIC is focused on:
The long-term goal:
Biomarker-driven neonatal drug development at scale.
This work reflects Hope for HIE’s commitment not just to supporting families—but to reshaping the regulatory and research ecosystem to accelerate meaningful therapies.
In the Working with Industry session, we engaged in an important discussion about how regulators, sponsors, academic investigators, and patient advocates must collaborate to advance tools and therapies in HIE and other neonatal indications.
The consensus was clear:
No single stakeholder can solve neonatal brain injury alone. Progress requires infrastructure, trust, and shared evidentiary standards.
Hope for HIE is committed to being a credible, steady partner in that work.
Beyond our sessions, it was energizing to see Medical Advisory Board members and collaborators actively contributing across the conference—from EEG science to epilepsy, MRI prognostication, cell therapies, advancing understanding and therapeutic potential for Mild HIE, equitable clinical trials in underresourced communities, and neonatal neurology overall.
The strength of this field lies in its multidisciplinary collaboration—and we are proud that Hope for HIE brings both scientific rigor and lived experience into these rooms.
We were thrilled to announce at INBBC, in partnership with the Newborn Brain Society, the upcoming HIE Awareness Month Hold-A-Thon, launching this April.
This collaborative initiative—rooted in evidence-based, family-centered, trauma-informed care—will invite NICUs worldwide to:
Holding is not symbolic. It is biologically and psychologically protective.
Learn more at PolarBearCare.org.
INBBC reaffirmed that the field is moving—toward harmonization, toward precision, toward partnership.
And Hope for HIE will continue to ensure that as science advances, families are not left behind—but included as equitable partners with immense value to bring to improving clinical care and driving forward research.
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