When Hope for HIE began more than a decade ago, it started as a small online peer group of families determined to make sense of life after a neonatal brain injury. Today, that same spirit of connection fuels a global nonprofit driving change across clinical care, research, and advocacy building awareness and comprehensive support for children and families..
In October 2025, Hope for HIE leaders, volunteers, clinicians, and research partners gathered in Charlotte, North Carolina, and online from all over the world, for our first ever Leadership Summit—a time to reflect, collaborate, and build the future together.
This year’s theme, “Turning Connection into Collective Action,” perfectly captured what makes this community unique: the power of families and professionals working side-by-side to transform outcomes for children and families affected by neonatal and pediatric-acquired hypoxic-ischemic encephalopathy (HIE).
Over two days, Hope for HIE’s staff, board, and key partners focused on how to strengthen and scale our programs as the organization continues to grow worldwide. We looked at ways to align operations across departments and partners—support, communications, and research—so every program connects seamlessly for the families we serve.
David Ford, President, opened the summit sharing perspective and reflections on the growth of the organization and the heart of the community along with Betsy Pilon, Executive Director, who led the morning sessions on enhancing the community experience and Hope for HIE's Programs and Services.
Another key theme was the integration of psychosocial and emotional support throughout the care continuum. Our licensed social worker and child life specialist shared lessons from Hope for HIE’s peer support programs, highlighting how mental health, community connection, and trauma-informed care influence long-term family well-being.
These conversations reaffirmed what families already know: medical progress and emotional healing go hand in hand. Building supportive care networks isn’t an “extra”—it’s a cornerstone of better outcomes for children and their parents.
Maggie Jalowsky and Dr. Danielle Barber presented the next steps in developing a Patient-Family Centered Research Agenda, aligning patient and scientist perspectives, and shared updates on the HIE Research Registry.
Participants engaged in robust activities designed to move forward the Hope for HIE Research Roadmap, with plans to continue in 2026 at the Hope for HIE Family & Community Conference.
Hope for HIE’s growth has always been powered by people—families who step forward to lead support groups, professionals who share expertise, and partners who help us expand our reach and fulfill our mission. At the Summit, participants discussed how to strengthen leadership pathways across our global community so that more lived-experience experts can take on visible roles in research, education, and advocacy.
Interactive workshops explored how to turn shared passion into measurable progress, with clear action steps for mentorship, storytelling, and professional development.
By the end of the Summit, the participants had identified several next steps to guide the next phase of Hope for HIE’s strategic growth:
Every year, thousands upon thousands of families face an HIE diagnosis with fear and uncertainty. Hope for HIE exists to ensure they never face it alone—and that their experiences fuel change across medicine and society. The 2025 Leadership Summit demonstrated what’s possible when community, compassion, and collaboration intersect.
Together, we’re turning connection into collective action—building a world where every child with HIE and every family who loves them has access to hope, healing, and the promise of progress.
Hope for HIE is excited to ask our community to SAVE THE DATE for April 24-26, 2026 for our first ever Family & Community Conference to be held in Boston, MA and virtually, blending SUPPORT & SCIENCE. More details are to follow on the format, program and registration. Stay tuned!
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