Every HIE journey is different — and yet, there are powerful threads that connect families across experiences, diagnoses, hospitals, and years. In this Peer Perspective Series conversation, Brigid and Ana, both mothers of children with HIE, shared their lived experiences as full-term NICU families and how those experiences shaped their paths into advocacy, healing, and connection. Their stories remind us that advocacy […]
As the season of giving unfolded, Hope for HIE was honored to conclude 12 Days of Hope—a heartfelt reflection on the many ways our community shows up for families around the world impacted by hypoxic ischemic encephalopathy (HIE). Over twelve days, we shared powerful stories directly from our families, volunteers, and advocates—stories told in their own words. Each one served as […]
At Hope for HIE, we are constantly working to bridge families with the latest research, emerging therapies, and the experts who are pushing the field forward. Recently, we sat down with Dr. Brian Kalish, neonatologist, neuroscientist, and Vice Chair of Hope for HIE’s Medical Advisory Board, to learn about a new clinical trial he’s leading at Boston Children’s Hospital. This study […]
We are thrilled to share that Hope for HIE’s Executive Director, Betsy Pilon, joined Keira Sorrells on the NICUnity Podcast to dig into a conversation that sits at the heart of our work—what it truly takes to fund, sustain, and grow (inter)national parent-led organizations rooted in lived experience. This episode, “Funding Parent-Led Progress: What National Organizations Need Most,” shines a […]
In 2019, Hope for HIE’s executive director, Betsy Pilon, published a family reflection in Pediatric Research that helped spark a broader conversation about what families navigating hypoxic-ischemic encephalopathy (HIE) need from their medical teams, researchers, and the systems meant to support them. It elevated long-standing concerns about diagnostic clarity, communication, long-term follow-up, and the disconnect between clinical outcomes and what […]
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