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

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Sleep Issues in HIE: Give Your Input for Research

Sleep Issues in HIE: Give Your Input for Research

March 20th, 2024  | News  | Sleep

Survey link: Tinyurl.com/HIESleep We’ve heard from thousands of families that sleep issues are one of the TOP unmet needs of our community, and across all outcomes and impacts, impacting the entire family. NOW IS YOUR CHANCE TO BE HEARD & DRIVE RESEARCH!!! We are a part of a research proposal to explore sleep issues with HIE, beginning in the NICU […]

March is Cerebral Palsy Awareness Month

March is Cerebral Palsy Awareness Month

March 12th, 2024  | Advocacy  | Cerebral Palsy  | News

March is Cerebral Palsy Awareness Month

Cerebral palsy is one of the more common diagnoses from HIE. While HIE-acquired cerebral palsy only accounts for roughly 10-15% of all cerebral palsy causes, roughly 40% of children diagnosed with HIE will go on to be diagnosed with cerebral palsy.

We are sharing all about the connection between HIE and cerebral palsy during March, and sharing resources for our community to learn more.

Child Life Series: Coping During a Dental Visit or Procedure

Child Life Series: Coping During a Dental Visit or Procedure

March 12th, 2024  | Child Life Resources  | News  | ORAL HEALTH  | Resources

As a parent or caregiver of a medically complex child, you’re likely aware of the discomfort they may experience when visiting the dentist. From navigating inaccessible spaces to managing heightened sensitivities, every aspect of the dental visit can pose unique challenges. It may feel as if you’re constantly navigating these hurdles in order to provide them with the oral health […]

Dental Disparities in Medically Complex Children: Q&A with Dr. Matthew Mara, DDS

Dental Disparities in Medically Complex Children: Q&A with Dr. Matthew Mara, DDS

February 27th, 2024  | HIE Education  | News  | ORAL HEALTH

It’s no secret that many people have some aversion to the dentist; those connected to medically complex children are likely even more familiar with the challenge of maintaining oral health and accessing professional care. Dr. Matt Mara, DDS., a practicing general dentist, assistant professor of general dentistry at Boston University, oral health researcher, Hope for HIE medical advisory board member, […]

2024 Seizure Action Plan Awareness Week

2024 Seizure Action Plan Awareness Week

February 12th, 2024  | Advocacy  | Epilepsy  | News

Epilepsy is one of the largest impacts from HIE, Hypoxic Ischemic Encephalopathy. Children across all outcomes can develop epilepsy, and HIE is a leading cause of several rare types of epilepsy such as Infantile Spasms, Lennox-Gastaut Syndrome, and ESES. Since seizures and HIE are so common, we recommend all families learn more about Seizure Action Plans, and go through Seizure First Aid training. Hope for HIE also supports all legislative efforts to improve the prevalence of Seizure Action Plans and Seizure First Aid through the Seizure Safe School campaign through the Epilepsy Foundation.

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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