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

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Advocacy is important; there’s no doubt about it. But let’s face it: putting it into action can be hard, especially when navigating the complexities of medical care. Between emotions running high, the need to digest large amounts of not-so-easy-to-understand information, and the pressure to make quick but responsible decisions, it’s totally normal to feel overwhelmed. Plus, add in the uncertainty, […]

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April 10th is National Siblings Day, and what better day than today to recognize Hope for HIE’s Super Sibs? What’s a Super Sib, you may ask? A sibling of a brother or sister with HIE across any outcome or impact. Sometimes, our Super Sibs can bear a significant load: they are asked to take on a lot, go forth with […]

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Between our phones, laptops, computers, and the myriad of other devices we use daily, it’s almost as if we have a virtual companion at our fingertips, ready to assist with any HIE-related questions or concerns, day or night. It’s natural to turn to digital tools for research and support, but here’s the catch: while AI offers convenience, it doesn’t always […]

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At Hope for HIE, we hold the providers who showcase their commitment and passion for research and improved clinical care practices for those impacted by HIE’s various outcomes near and dear to our hearts. So when Dr. Laura Gilbert, a pediatric neurologist at Lurie’s Children’s Hospital, teamed with us during Cerebral Palsy Awareness Month to shed light on a prevalent […]

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So many of our medically complex kids get recurrent respiratory infections. Researchers at Vanderbilt University are wanting to hear YOUR experience as a parent on how to improve care! The team is looking at getting input from families to develop patient and family-centered outcome measures. Details below! Who: US-based families of medically complex kids who have been hospitalized for respiratory illnesses […]

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Welcome to 2024 HIE Awareness Month! We come together every April – families, clinicians, researchers, partners, supporters and others in our global community – to spread awareness into the world about neonatal and childhood acquired Hypoxic Ischemic Encephalopathy. This year, the community theme is TRANSFORMING HOPE. Our community is over 10,000 families, researchers, clinicians, and community members strong, across all ages and […]

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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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UPCOMING EVENTS

HIE Awareness Month - April 1 - April 30

Join us for 2024’s global HIE Awareness Month — TRANSFORMING HOPE. We have many ways to get involved. Check out HIEawarenessmonth.com!

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HIE Spirit Day 2024 - April 15 - April 15
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Navigating HIE & Social Media Support Group - April 15 @ 12:00 pm - April 15 @ 1:00 pm

Join Hope for HIE on Monday, April 15 at 12:00 p.m. ET for our video support group session where we’ll be discussing helpful ways to navigate social media. ➡️ In this closed Zoom meeting led by Hope for HIE’s licensed social worker, Haley, and facilitated by one of our peer mentors – Lynn G. – families will be engaged in a […]

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The Importance of Data in HIE Progress: Q&A with Dr. Danielle Barber - April 16 @ 2:00 pm - April 16 @ 3:00 pm

Join Hope for HIE on Tuesday, April 16, at 2 p.m. EST, as Dr. Danielle Barber offers valuable insights into how harnessing data can drive meaningful progress in understanding and managing HIE. Specifically, she’ll explore: 📌 The state of HIE research and data related to long-term outcomes 📌 How Hope for HIE is working to build a registry 📌 What […]

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Adoptive & Foster Parents Support Group - April 16 @ 8:00 pm - April 16 @ 9:00 pm

Join Hope for HIE on Tuesday, April 16 at 8:00 p.m. ET for our video support group designated for our foster and adoptive parents of children with HIE. ➡️ This closed Zoom session is peer-led by one of Hope for HIE’s Peer Support Mentors – Stephanie L.– who will help lead families in a safe space of support, healing, and […]

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HIE Remembrance Day 2024 - April 20 - April 20
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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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HIE Remembrance Day Ceremony with Julie Keon, RSSW, Grief Counselor - April 20 @ 2:00 pm - April 20 @ 3:00 pm

Join Julie Keon, RSSW, Grief Counselor, Life-Cycle Celebrant, and author of “What I Would Tell You: One Mother’s Adventure with Medical Fragility,” as she leads us in a virtual ceremony to honor the children in our community whose lives reached completion in this past year. Through words and ritual, Julie will guide us in remembering each one; never to be […]

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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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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
INQUIRIES

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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