Our families are all too familiar with the agonizing “wait and see” game that comes with an HIE diagnosis. The uncertainty surrounding our child’s long-term impacts, outcomes, and quality of life is a harsh reality we grapple with daily. We wait for results, we wait for researchers to uncover new therapeutic interventions, and we wait for data that could offer […]
Advocacy is important; there’s no doubt about it. But let’s face it: putting it into action can be hard, especially when navigating the complexities of medical care. Between emotions running high, the need to digest large amounts of not-so-easy-to-understand information, and the pressure to make quick but responsible decisions, it’s totally normal to feel overwhelmed. Plus, add in the uncertainty, […]
Between our phones, laptops, computers, and the myriad of other devices we use daily, it’s almost as if we have a virtual companion at our fingertips, ready to assist with any HIE-related questions or concerns, day or night. It’s natural to turn to digital tools for research and support, but here’s the catch: while AI offers convenience, it doesn’t always […]
So many of our medically complex kids get recurrent respiratory infections. Researchers at Vanderbilt University are wanting to hear YOUR experience as a parent on how to improve care! The team is looking at getting input from families to develop patient and family-centered outcome measures. Details below! Who: US-based families of medically complex kids who have been hospitalized for respiratory illnesses […]
Welcome to 2024 HIE Awareness Month! We come together every April – families, clinicians, researchers, partners, supporters and others in our global community – to spread awareness into the world about neonatal and childhood acquired Hypoxic Ischemic Encephalopathy. This year, the community theme is TRANSFORMING HOPE. Our community is over 10,000 families, researchers, clinicians, and community members strong, across all ages and […]
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