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

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LATEST NEWS

We are sharing three opportunities to participate in research that may interest our community. More information about each study is available on our Clinical Trial & Research Hub. Parental Feedback for Neonatal Resuscitation (SURV1VE trial): A new protocol for neonatal CPR shows promise to improve outcomes and the study team is looking for parents perspectives on communication, enrollment and consent […]

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Families facing hypoxic ischemic encephalopathy often turn to internet research for information about the condition and possible treatments. This tool will help families critically analyze what they are reading and if it is applicable to their child, and worth elevating to their medical team.

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Families facing hypoxic ischemic encephalopathy often turn to internet research for information about the condition and possible treatments. This tool will help families critically analyze what they are reading and if it is applicable to their child, and worth elevating to their medical team.

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Doing your own research also involves building health literacy skills, and looking beyond headlines for HIE – hypoxic ischemic encephalopathy.

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After hearing from thousands of families that sleep issues are one of the top unmet needs of our community across all outcomes and impacts, Dr. Renée Shellhaas, a pediatric neurologist and researcher, principal investigator of the Neonatal Seizure Registry, and one of Hope’s esteemed Medical Advisory Board members, and her team launched a survey for our community that aimed at […]

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HIE Success Stories with Hypoxic Ischemic Encephalopathy

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We are thrilled to introduce the SOAR program, an exciting new initiative designed to support children as they grow into their lives with HIE. The program is the brainchild of Annie Gunning, Hope’s certified Child Life Specialist, who has been deeply involved in our community and responsive to the feedback and needs expressed by parents, particularly those who have shared […]

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Q&A with Dr. Lana Chalak, Dr. Kenji Cunnion, Dr. Nikki Robertson, and Dr. Brian Kalish We’ll start with where we are. HIE is not a one-size-fits-all condition, and there is no one-size-fits-all treatment approach. Aside from cooling, which has only been considered the standard of care for the last two decades and is not universally available, equitable, and effective in […]

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Every child deserves the opportunity to navigate their path and confidently own their story, but for children with HIE, their path to self-advocacy can be uniquely challenging. That’s why Annie Gunning, Hope for HIE’s certified child life specialist, recently participated in a Q&A session aimed at equipping them with tools and strategies that will empower them to advocate for their […]

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Navigating the complexities of HIE can often feel like wading through a thicket of uncertainties and questions. Families can spend a lot of time and resources to discern the root cause of the diagnosis, often amidst a tangle of information and misperceptions. It’s a journey that requires delving into the details, understanding the nuances, and working closely with medical teams […]

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UPCOMING EVENTS

Navigating Moderate Outcomes: HIE Peer Perspectives Series - July 22 @ 9:00 am - July 22 @ 10:30 am

Join Hope for HIE on Monday, July 22 at 9:00 AM ET for the latest installment of our HIE Peer Perspective Series, in which we’ll explore more moderate outcomes of HIE. ➡️ 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 – Meagan Corona and […]

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Exploring Ethics in Neonatal Trials: Q&A with Dr. Robert Nelson - July 23 @ 10:00 am - July 23 @ 11:00 am

Join Hope for HIE on Tuesday, July 23 at 10 AM ET for our Live Q&A session with Dr. Robert “Skip” Nelson, a renowned pediatric bioethicist and Senior Director of Pediatric Drug Development in the Child Health Innovation Leadership Department at Johnson & Johnson, as he discusses ethical considerations in neonatal trials. Specifically, we’ll cover: The evolution of ethical considerations […]

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HIE Dads Support Group (July 2024) - July 25 @ 8:30 pm - July 25 @ 9:30 pm

Join Hope for HIE on Friday, July 26 at 8:30 AM AWST (Australian Western Standard Time) for our video support group specifically for HIE dads. While this session aims to be accessible for our international HIE dads, it is open to all dads in our HIE community. For those in the Eastern Time zone, the meeting will be Thursday, July […]

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Super Sib Connection Circle (July) - July 28 @ 3:00 pm - July 28 @ 7:30 pm

Don’t forget: Annie Gunning — Hope for HIE’s Child Life Specialist — is hosting a virtual Super Sibs Connection Circle to give each Super Sib in the loss community an opportunity to meet, ask questions, interact, and connect with others within their age group who “just get it.” Be sure to register for the proper Connection Circle using the age group […]

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Navigating Grief and Trauma Support Group (July 2024) - July 30 @ 12:00 pm - July 30 @ 1:00 pm

Join Hope for HIE on Tuesday, July 30 at 12 PM ET for our video support group session where we’ll be discussing helpful ways to navigate grief and trauma. ➡️ In this closed Zoom meeting, which is led by our social worker, Haley Thomas, and facilitated by one of Hope’s Peer Support Mentors – Allison Moise – families will be […]

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Newly Diagnosed Virtual Support Group - August 1 @ 8:00 pm - August 1 @ 9:00 pm

Join Hope for HIE on Thursday, August 1 at 8:00 PM ET for our monthly 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 Hope’s Peer Support Mentors – Nicole […]

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Loss Families Virtual Support Group - August 8 @ 8:00 pm - August 8 @ 9:00 pm

Join Hope for HIE on Thursday, August 8 at 8:00 PM ET for our video support group session designated for loss families. Parents and legal guardians who have lost their children due to HIE, either at birth or in childhood, are invited to participate in this support group. ➡️ In this closed Zoom meeting experience led by Hope for HIE’s […]

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Super Sib Loss Connection Circle (August) - August 11 @ 3:00 pm - August 11 @ 7:30 pm

Don’t forget: Annie Gunning — Hope for HIE’s Child Life Specialist — is hosting a virtual Super Sibs Connection Circle to give each Super Sib in the loss community an opportunity to meet, ask questions, interact, and connect with others within their age group who “just get it.” Be sure to register for the proper Connection Circle using the age group […]

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Work-Life Balance Virtual Support Group - August 12 @ 8:00 pm - August 12 @ 9:00 pm

Join Hope for HIE on Monday, August 12th at 8:00 PM ET for our video support group session designated for parents navigating a career while balancing the responsibilities that come with caring for a child with HIE and their unique medical needs. ➡️ This closed Zoom session is led by one of Hope’s Peer Support Mentors– Allison Moise – to […]

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Pregnancy after HIE Virtual Support Group - August 14 @ 8:00 pm - August 14 @ 9:00 pm

Join Hope for HIE on Wednesday, August 14, at 8:00 PM ET for our “Navigating Pregnancy and HIE” support session. We will discuss managing the stress of pregnancy after HIE and finding support for the complex feelings that come with an additional pregnancy. ➡️In this closed Zoom meeting, led by our social worker Haley Thomas and facilitated by one of […]

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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 10,000 families worldwide, 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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