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

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LATEST NEWS

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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It has been a busy week of new research being published and shared, and while we regularly share these in our Advocacy & Research group, this week seemed like a good time to post in one easily accessible area. As always, we share relevant research that is focused on the many aspects of HIE — decreasing the impact and incidence […]

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We don’t know about you, but we think it’s time to recognize, celebrate, and empower the unsung HIEroes of the HIE community — the brothers and sisters who stand strong alongside their HIE siblings and those they remember who have passed. Sometimes, our Super Sibs can bear a significant load: they are asked to take on a lot, go forth […]

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As any parent may attest, there are times throughout the year when supporting your child’s schoolwork can cause stress. After all, when — no — why did they change math? As a parent or caregiver of a medically complex child who may undergo several planned or unplanned hospitalizations, you may know all too well the stress that comes with navigating […]

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UPCOMING EVENTS

Navigating Dystonia - HIE Peer Perspectives Series - March 20 @ 1:00 pm - March 20 @ 2:00 pm

Join Hope for HIE on Wednesday, March 20th at 1:00 PM EST for the next installment of the HIE Peer Perspective Series, where we’ll discuss how to navigate dystonia. ➡️ This closed Zoom support session is led by Hope for HIE’s licensed social worker, Haley, and is facilitated by dedicated members of our community – Clarissa, an HIE Parent, and […]

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Navigating HIE and Kidney Impacts - HIE Peer Perspectives Series - March 25 @ 12:00 pm - March 25 @ 1:00 pm

Join Hope for HIE on Monday, March 25th at 12:00pm EST for the next installment of the HIE Peer Perspective Series, where we’ll discuss how to navigate HIE and kidney impacts. ➡️ This closed Zoom support session is led by Hope for HIE’s licensed social worker, Haley, and is facilitated by two HIE parents – Margie J. and Julie M. […]

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Navigating Grief and Trauma Support Group - March 25 @ 8:00 pm - March 25 @ 9:00 pm

Join Hope for HIE on Monday, March 25th at 8:00 PM EST for our video support group session where we’ll be discussing helpful ways to navigate grief and trauma. ➡️ This closed Zoom session is peer-led by one of Hope for HIE’s Peer Support Mentors, Allison, who will help lead families in a safe space of support, healing, and connection. […]

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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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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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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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