Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

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Every Voice Matters: AAC Awareness Month and Resources for HIE Families

Every Voice Matters: AAC Awareness Month and Resources for HIE Families

October 5th, 2025  | AAC  | Advocacy  | News

For many children and adults with Hypoxic Ischemic Encephalopathy (HIE), communication can look different. Some may develop speech later than expected. Others may rely on gestures, sounds, or facial expressions to connect. And for many, speaking words out loud may never be the most effective or reliable way to share their thoughts, needs, and personalities. That’s where AAC — Augmentative […]

Hype or Hope: Hyperbaric Oxygen Therapy (HBOT) & HIE

Hype or Hope: Hyperbaric Oxygen Therapy (HBOT) & HIE

October 1st, 2025  | Advocacy  | News  | Research

HBOT: Breathing New Life Into the Brain… Or Blowing Hot Air? You’ve likely seen the claims: “We reversed brain damage with hyperbaric oxygen!”“HBOT gave our child a second chance!”“This is the miracle therapy your neurologist won’t tell you about!” When your child has a diagnosis like HIE or cerebral palsy, and the medical team tells you there are no guarantees—or […]

October is Learning Disabilities Awareness Month

October is Learning Disabilities Awareness Month

October 1st, 2025  | Learning and Attention  | News

Learning & Attention challenges are prevalent in our community. While early identification is possible between the ages of 3-5, most children are not able to be identified until ages 5-8 because of how the brain develops, and when higher order thinking and learning begins to happen. The incidence is estimated roughly 40% of those who do not develop cerebral palsy, […]

Advancing Research for Neonatal HIE: Starting the Neonatal Brain Injury Collaborative

Advancing Research for Neonatal HIE: Starting the Neonatal Brain Injury Collaborative

October 1st, 2025  | News  | Research

Every year, thousands of newborns experience brain injury due to conditions such as hypoxic-ischemic encephalopathy (HIE), white matter injury, or intraventricular hemorrhage (IVH). While therapeutic hypothermia (cooling) has improved outcomes for some with neonatal HIE, it remains the only approved treatment. For decades, progress in developing new therapies has been hindered by fragmented data, limited follow-up, and a lack of […]

Hype vs. Hope: “Functional Neurology” & Unlicensed Brain-Based Therapies

Hype vs. Hope: “Functional Neurology” & Unlicensed Brain-Based Therapies

September 29th, 2025  | Advocacy  | News

When Desperation Meets a Dangerous Market When your child has HIE, cerebral palsy, or epilepsy, the unknowns can feel unbearable. The internet is full of stories, testimonials, and ads offering miracle recoveries—often wrapped in scientific-sounding language and emotional storytelling. But not all providers who talk about the brain are qualified to treat it. And not all hope is helpful. This […]

SHARE YOUR HIE STORY

One of the ways many HIE families work through the trauma of their journey is sharing their story to help other families who will find us in their own HIE journey. We hope you’ll take a few minutes and share yours with us. We’ll publish it to our Family Stories blog!

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