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

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Hypoxic-ischemic encephalopathy (HIE) is a condition that affects infants and children with many causes due to reduced oxygen supply before, during or after birth, and in childhood, leading to potential neurological challenges. One crucial aspect of managing HIE in children is understanding their baseline, which refers to their typical level of functioning or development. This concept plays an important role […]

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When you think about the different impacts of HIE, your mind may jump to more well-known conditions like epilepsy or cerebral palsy. But here’s something you might not have heard: around 30 to 50 percent of newborns with moderate to severe HIE might also experience Acute Kidney Injury (AKI) in their early days. And for some of them, there’s a […]

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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 […]

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March is Cerebral Palsy Awareness Month Cerebral palsy is one of the more common diagnoses from HIE. While HIE-related cerebral palsy only accounts for roughly 10-15% of all cerebral palsy causes, roughly 40% of children diagnosed with HIE will be diagnosed with cerebral palsy. We are sharing all about the connection between HIE and cerebral palsy during March, and sharing […]

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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 […]

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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, […]

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Does your child have seizures or epilepsy? Are they on anti-seizure medication? You need a Seizure Action Plan! Seizure Action Plan Awareness Week highlights the importance of having a seizure action plan in place. The awareness campaign is supported by the Seizure Action Plan Coalition. What is a Seizure Action Plan? A Seizure Action Plan – or SAP – incorporates tailored […]

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You may have noticed we are spotlighting the patient-family experience of impacts to dental and oral healthcare, and you’re right! Children with HIE are at greater risk for certain oral health impacts, and in the context of disability, there is a significant disparity experienced by medically complex children and families to access the same care as typically developing children. You […]

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February is Heart Month and Congenital Heart Defect Awareness Month. As with every other system in the body, Neonatal and Pediatric-acquired Hypoxic Ischemic Encephalopathy (HIE) can also impact cardiovascular health and function, and there’s also an overlap with Congenital Heart Defects and HIE (as well as other types of brain injury). HIE can negatively impact the cardiovascular system, either transiently […]

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February is #FullTermNICU awareness month. The majority of #HIE babies are born full term. Does it surprise you to learn that around 50% of #NICU babies are full term? There is a significant disparity in representation of full term families in #Neonatology research, family-centered care leadership, and QI. 99% of NICU family advisory councils are made up of #Preemie parents. […]

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UPCOMING EVENTS

MAB Q&A: Exploring HIE & Dystonia with Dr. Laura Gilbert - March 29 @ 12:00 pm - March 29 @ 1:00 pm

Join Hope for HIE on Friday, March 29 at 12:00 PM ET for a live streaming of our Q&A entitled “Exploring HIE and Dystonia” with Dr. Laura Gilbert, who will explore the causes of Dystonia, its treatment and management, as well as additional impacts, including Status Dystonicus and dystonic storming. Watch the live stream on our Facebook, Instagram, or YouTube […]

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Newly Diagnosed Support (April 2024) - April 4 @ 8:00 pm - April 4 @ 9:00 pm

Join Hope for HIE on Thursday, April 4, at 8:00 p.m. ET for our video support group session, designated for parents and legal guardians who are NEW TO HIE (within one year of diagnosis). ➡️ In this closed Zoom meeting led by Hope for HIE’s licensed social worker, Haley, and facilitated by one of our peer mentors – Nicole C. – […]

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Peloton Tread Hustle for Hope Event - April 13 @ 10:00 am - April 13 @ 10:30 am

IT’S TIME TO HUSTLE FOR HOPE! On April 13th, join Hustle Host Erica Hicks and other community members for a Hustle for Hope Peloton Tread session! 📌 Starting at 10:00 AM PST, take this 30-minute Run with Adrian that aired on 12/16/22: TinyURL.com/HustleforHopePelotonRun 📌 Be sure to add #HustleForHope5K to your Peloton profile before you begin! HOW TO REGISTER: 📌 […]

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Peloton Bike Hustle for Hope Event - April 13 @ 10:40 am - April 13 @ 11:00 am

IT’S TIME TO HUSTLE FOR HOPE! On April 13th, join Hustle Host Erica Hicks and other community members for a Hustle for Hope Peloton Bike session! 📌 At 10:40 AM PST, take this 20-minute Classic Rock Ride with Emma that aired on 12/16/21: TinyURL.com/HustleforHopePelotonRide 📌 Be sure to add #HustleForHope5K to your Peloton profile before you begin! HOW TO REGISTER: […]

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Cherry Hill, NJ Hustle for Hope 5K Event - April 14 @ 10:30 am - April 14 @ 1:00 pm

IT’S TIME TO HUSTLE FOR HOPE! We are hosting an in-person event at Challenge Grove Park (Jake’s Place) on Sunday, April 14th from 10:30 AM to 1:00 PM EST in Cherry Hill, NJ — just outside of Philly! Complete the 5K YOUR way and meet local families along the way! HOW TO REGISTER: 📌 Starting February 15th, you can register […]

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Aurora, CO Hustle for Hope 5K Event - April 20 @ 9:00 am - April 20 @ 12:00 pm

IT’S TIME TO HUSTLE FOR HOPE! We are hosting an in-person event at Red Tailed Hawk Park on Saturday, April 20th from 9 AM to 12 PM MST in Aurora, Colorado! Complete the 5K YOUR way and meet local families along the way! HOW TO REGISTER: 📌 Starting February 15th, you can register specifically for this in-person event on our […]

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Chalfont, PA Hustle for Hope 5K Event - April 20 @ 10:00 am - April 20 @ 12:00 pm

IT’S TIME TO HUSTLE FOR HOPE! We are hosting an in-person event at Lions Pride Park in Chalfont, PA on Saturday, April 20th from 10 AM to 12 PM EST. Complete the 5K YOUR way and meet local families along the way! HOW TO REGISTER: 📌 Starting February 15th, you can register specifically for this in-person event on our registration […]

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Sparks, NV Hustle for Hope 5K Event - April 21 @ 8:30 am - April 21 @ 12:30 pm

IT’S TIME TO HUSTLE FOR HOPE! We are hosting an in-person event at Sparks Marina Park on Sunday, April 21st from 8:30 AM – 12:30 PM PST in Sparks, Nevada! Complete the 5K YOUR way and meet local families along the way! HOW TO REGISTER: 📌 Starting February 15th, you can register specifically for this in-person event on our registration […]

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Detroit, MI Hustle for Hope 5K Event - April 21 @ 11:00 am - April 21 @ 1:00 pm

IT’S TIME TO HUSTLE FOR HOPE! We are hosting an in-person event at Rotary Park on Sunday, April 21st from 11:00 AM to 1:00 PM EST near Detroit, MI! Complete the 5K YOUR way and meet local families along the way! HOW TO REGISTER: 📌 Register specifically for this in-person event on our registration site: TinyURL.com/HustleforHope📌 Visit the event page […]

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Imperial, PA Hustle for Hope 5K Event - April 27 @ 8:30 am - April 27 @ 11:30 am

IT’S TIME TO HUSTLE FOR HOPE! We are hosting an in-person event at Donaldson Park on Saturday, April 27th from 8:30-11:30 AM EST in Imperial, Pennsylvania! Complete the 5K YOUR way and meet local families along the way! HOW TO REGISTER: 📌 Starting February 15th, you can register specifically for this in-person event on our registration site: TinyURL.com/HustleforHope 📌 Visit […]

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WELCOME

We are the worldwide voice of families who have children with Hypoxic Ischemic Encephalopathy

We’re the largest collective of HIE help, support, resources, and families in the world, with an incredibly active and engaged community. Hope for HIE is deeply committed to providing comprehensive, personalized support for each family’s journey.

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RESOURCES

We have been scared. We have felt alone. We have felt overwhelmed. Our mission is to improve the quality of life for children and families affected by Hypoxic Ischemic Encephalopathy through awareness, education and support.

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RESEARCH
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We regularly work with researchers, clinicians and industry partners who are working to decrease the incidence of HIE, and improve the quality of life for babies and children who face it. If you are a researcher and would like to partner with our community of over 8,500 families, reach out.

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Hope for HIE’s Board of Directors, Medical Advisory Board, Council of Advisors, and volunteers can provide in-depth professional insight and storytelling on a variety of topics.

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