We know support isn’t one-size-fits-all, and while we often focus on parents and caregivers, our kids—both those diagnosed with HIE and their siblings—need just as much care, understanding, and connection. Over the past year, and under the direction of Annie Gunning, Certified Child Life Specialist and Grief Counselor, we’ve been listening, learning, and refining—piloting new content, gathering feedback, and adjusting […]
Today is the last day of HIE Awareness Month.I thought I’d spend the whole month talking about it—sharing our story, raising awareness, educating.But I didn’t.Because even a year later, some of the trauma is still too raw to put into words.Even with Heidi developing right on track…Even though you’d never know she had such a scary start.The truth is, I […]
At the end of March 2025, Neuren Pharmaceuticals publicly shared their intent to explore their current approved neurodevelopmental NNZ-2591 compound for an indication in neonatal Hypoxic Ischemic Encephalopathy. Hope for HIE has been engaged to provide patient-family input to all parts of the development process — from study design to longitudinal follow-up. “This is a very exciting time for therapeutic […]
When your baby is diagnosed with HIE, it can feel like you’ve suddenly been dropped into a world where everything is unfamiliar — a whirlwind of medical terms, acronyms, and test results you’re expected to understand on the fly. It’s like learning a completely new language overnight, all while navigating the emotional weight of the NICU. From lab values and […]
Over the last 2-3 years, HIE scientific advancement has been accelerating at a quick pace — both in finding ways to learn more to decrease the incidence of neonatal and pediatric-acquired HIE, and in therapeutic and care advancements to improve the quality of life for babies, children and families. Hope for HIE has been a pivotal part in the HIE […]
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
