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

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April is Autism Awareness & Acceptance Month

April is Autism Awareness & Acceptance Month

April 26th, 2024  | News

HIE can cause autism at up to 44% higher incidence than neurotypical babies and children, and children with HIE who don’t have motor impacts were 6x more diagnosed than those with motor impacts. HIE is a SPECIFIC cause/etiology of autism. Others include genetic, metabolic, prematurity, structural brain anomalies, toxic shock, infection, inflammatory disease and traumatic injury, as well as environmental […]

HEAL Study Research Update

HEAL Study Research Update

April 25th, 2024  | News  | Research

The HEAL Study looking at therapeutic hypothermia (cooling) and a medication called erythropoietin is one of the most recent, and most significant, clinical trials in the context of HIE research over the last decade. The results were technically “negative” – meaning erythropoietin didn’t show a clinical benefit – but the data collection and size of the cohort, 500 families strong […]

Support for Enrolled Families in Clinical Trials

Support for Enrolled Families in Clinical Trials

April 21st, 2024  | News  | Research

Enrolled in a clinical trial or research study? We’re building out dedicated groups for families to connect. HIE families have a long history of participation in clinical trials in the pursuit of improving therapeutic options and care (it’s why we have cooling!) Currently, there are two trials underway that we are supporting and have set up dedicated groups for: If […]

The Importance of Patient-Family and Clinical Data in HIE Progress: Q&A with Dr. Danielle Barber

The Importance of Patient-Family and Clinical Data in HIE Progress: Q&A with Dr. Danielle Barber

April 18th, 2024  | Advocacy  | HIE Education  | News  | Research  | Resources

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 […]

Parenting through Trauma: Q&A with Dr. LaTrice L. Dowtin

Parenting through Trauma: Q&A with Dr. LaTrice L. Dowtin

April 16th, 2024  | Care  | HIE Education  | News  | Resources  | Self Care  | Therapy

No matter its length, whether it’s a NICU stay, PICU stay, or hospitalization, the experience is often accompanied by trauma, and our HIE families want an anchor amidst the storm. In our recent conversation with Dr. Latrice L. Dowtin, Co-Chair of the National Network of NICU Psychologists, founder and clinician at PlayfulLeigh Psyched, and Hope for HIE Medical Advisory Board […]

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!

Share Your Story

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