Hope for HIE hosted its second workshop at the 2025 International Newborn Brain Conference in February, as a part of the process to develop long-term follow-up guidelines for neonatal Hypoxic Ischemic Encephalopathy, as no guidelines currently exist. Children with HIE often are only followed closely until age 2 or 3, and many will have developmental impacts into childhood and beyond. […]

Hope for HIE’s SuperSibs program has expanded! In its inaugural year in 2024, enrolled siblings received different drops in the mail with developmentally-appropriate cohorted support packages. These contained thoughtful and curated activities, fun and unique SuperSibs swag, as well as connection to SuperSibs Support Circles hosted by Annie Gunning, CCLS, Hope for HIE’s Child Life Specialist. For 2025, Annie Gunning […]

HIE AWARENESS MONTH IS COMING! APRIL IS RIGHT AROUND THE CORNER! We are excited to announce our annual global theme for 2025: HOPE IN ACTION. We look forward to sharing the many stories of how not only Hope for HIE and our volunteers, families, and staff are moving forward the advocacy landscape for HIE, but the many stories in our […]

Hope for HIE was recently awarded the NICU Parent Network Innovation Award for our Halo of Support longitudinal model for clinical trials at the NPN Leadership Summit held February 14 in Cleveland, Ohio. Matt Kegyes, Board of Directors Treasurer (pictured in the middle), attended the awards ceremony on behalf of Hope for HIE, networking with attendees, and celebrating the NICU […]

Last night, a talking point to discredit scientific spending in the United States was misused creating additional confusion surrounding research, and specifically research using mice to advance important therapeutics and understanding of diseases and conditions. HIE is no stranger to mouse models to advance research. The Vannucci model, funded by the NIH, sas been the “gold standard” for decades. That, […]

Is HIE rare or not? That is a common question! The answer, as usual with HIE, is not a clear yes or no but rather a sometimes or maybe, or depends on the context and who you ask. HIE itself is typically not considered rare, impacting roughly 2-3 per 1,000 live births in high-income countries (which is considered rare in […]

Supporting siblings of children with HIE or medical complexities can feel like walking a tightrope. You want to ensure they feel included, understood, and supported, but with so much focus on medical care, it’s easy to wonder if you’re doing enough. You’re not alone in this—so many parents in our community have the same questions and concerns. That’s why we […]

Cerebral palsy is one of the more common diagnoses from HIE. While HIE-related cerebral palsy only accounts for roughly 10-15% of all cerebral palsy causes, roughly 40% of children diagnosed with HIE will be diagnosed with cerebral palsy. This March, we’re highlighting the connection between HIE and cerebral palsy, sharing valuable resources to support our community in learning more. Throughout […]

Hope for HIE recently had an exploratory meeting with researchers looking into improving care for children who experience Disorders of Consciousness (DOC) from pediatric-acquired HIE, older than six months old. The workgroup’s intent is to advance multidisciplanary collaborative research, globally, for this underserved population in our community. Debra Curran, HIE parent, was a featured speaker at the Pediatric Neurocritical Care […]

Representation for disability, HIE, and cerebral palsy in media — movies, books, and television — just got another boost. Netflix’s latest release, “Lucca’s World,” is a poignant drama that delves into the challenges and triumphs of a family navigating life with a child born with HIE, and diagnosed with cerebral palsy. The film is inspired by the real-life experiences of […]