Our community shows up for families touched by HIE in ways big and small. A sign held up in a stadium. A story shared with a stranger. A call to serve as Hospital Ambassador or Peer Support Mentor. Just as often, it’s something quieter: a gift made that funds the work families depend on. Every family finds their own way […]

Most follow-up care after neonatal hypoxic ischemic encephalopathy (HIE) has focused on motor outcomes, like cerebral palsy, epilepsy, and on some early childhood cognitive development. A new scoping review, published July 29, 2026 in the Journal of Perinatology, asks a different question: what happens to a child’s emotional health after HIE — and are we watching closely enough for it? […]

One of the hardest parts of HIE is the waiting. Families often leave the NICU or PICU with test results, medical language, follow-up appointments, and a phrase they may hear over and over: We will have to wait and see. Wait and see how your baby develops. Wait and see whether new challenges appear. Wait and see what the MRI […]

Recently, the Lee family attended a World Cup game in Canada, their home country. They reached out to us, wondering if this could be a good opportunity to help spread awareness of Hope for HIE and HIE to a wider audience. How could they make this experience about more than just the game? Could they try to get Hope for […]

Tuesday, July 7, 2026 was a big deal for the HIE community. Hope for HIE leadership was in Washington, D.C. for the ARPA-H Making Obstetrics Care Smart (MOCS) public kick-off meeting — and we weren’t just in the room. We were driving the patient-family stakeholder perspective forward. Executive Director Betsy Pilon joined the “Collaborator Voices” session alongside Liz Powell, Founder […]

An HIE diagnosis doesn’t just change your child’s story, it reshapes the relationships around you. In this Peer Perspective Series panel, two HIE moms, Shayna B. and Kati L., opened up about how relationships with partners, family, medical teams, and community shifted, strained, and grew across their HIE journeys. We’re sharing the key notes from the Peer Perspective Panel, along […]

No family should have to navigate an HIE diagnosis alone. That’s the heart of our HIE Ambassador Program — connecting families with a local, experienced member of our community who understands the road ahead, because they’ve walked it themselves. Ambassadors act as the “bridge” between their local hospital and health systems and Hope for HIE’s longitudinal support, offering education, connection, and a […]

Simple Summer Activities That Support Emotional Expression, Coping, and Connection Summer doesn’t have to only include structured therapy or carefully planned interventions to be healing. Sometimes, the most powerful coping tool available to your child is already in their backyard — a bucket of water, a box of sidewalk chalk, or a pile of blocks. In this month’s Child Life […]

Today, the Child Neurology Society announced its 2026 award winners. Leading off with the Philip R. Dodge Young Investigator Award is Dr. Danielle Guez Barber. This is one of the highest honors a young physician-scientist in child neurology can receive — and there is no one more deserving who has dedicated their life to Hope for HIE. A HIE Parent, […]

The HIE Registry — a combined effort between Hope for HIE, the Cerebral Palsy Research Network (CPRN), and the Newborn Brain Society (NBS) — has been awarded a three-year grant from the Pediatric Epilepsy Research Foundation (PERF) to expand what it can do. For our community, that means better data, better research, and better answers. Why it matters HIE has […]