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

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LATEST NEWS

NOW AVAILABLE! Casual Crafts by Mrs. White has once again designed our annual ornament. For $12 ($8 for the ornament, $4 for shipping), you can adorn your tree, or hang this in a special place in your house! These make excellent gifts for teachers, therapists, friends and family members! And, $2 of each purchase goes back to Hope for HIE. […]

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At Hope for HIE, we receive many requests from our community members for more ways to get involved. Well, we are here to deliver on that request! As we continue to grow and create educational resources that help bridge the gap between the hospital and home, we need volunteers who have the skill set to translate these resources into various […]

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Understanding seizures and epilepsy can be daunting, but it’s easier when we have a notable pediatric neurologist like Dr. Alexa Craig from Maine Medical Center to educate and guide us!  If you couldn’t attend her live Q&A, there is no need to worry. We took notes, and like any good partner, we’re willing to share! Here are nine key takeaways: […]

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Hope for HIE is excited to announce the addition of Deanna Bryan to the organization as Program Manager. Deanna brings an extensive background in education, consulting and training to the role. In her role, she is responsible for managing many of Hope for HIE’s outreach programs, events and educational content. She will also be helping the organization move forward its […]

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As a global patient advocacy organization working to improve the quality of life for children and families impacted by neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy, many who have lifelong disabilities, and based out of the United States, we want to share the concern many families have raised in regards to the United States Supreme Court decision to overturn the long-standing […]

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EEGs can be very stressful to prepare for, live with, and clean up the literal mess they cause. But, with so many families going through them with their children, we’ve assembled the best advice, and some links from other vetted medical organizations to help you out. What is an EEG and why would my child get one? EEG (Electroencephalogram) is […]

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Simran Bansal, graduating senior at Duke University, spent the last year as Hope for HIE’s first intern. As a part of her senior capstone project, she interviewed over 65 families and clinicians involved in the HIE community, to put together an anthology of the Hope for HIE community. Through storytelling, Simran wanted to help families heal, give them an opportunity […]

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We continue building out the most comprehensive multidisciplinary group to advise us as we grow and fulfill our mission and are excited to announce the appointment Dr. Jori Bogetz to Hope for HIE’s Medical Advisory Board. Dr. Bogetz brings incredible expertise and passion to the focus area of pediatric palliative care medicine. Through her work, she helps children and families who […]

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ReAlta Life Sciences, Inc. (“ReAlta”) a clinical stage, rare disease company addressing life-threatening diseases through harnessing the power of the immune system, announces its support of Hope for HIE, a global patient advocacy organization, as a platinum-level Partner in Hope, during April’s HIE Awareness month. HIE, or hypoxic ischemic encephalopathy, is a type of brain injury that impacts babies around […]

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Hi. I’m Steve, and what I’m about to share isn’t simply just a pump for an extremely worthy cause because there are so many – it’s an important piece of my life’s puzzle that I want to talk about and yet it’s an issue that’s still shrouded in a lot of mystery, maybe in part due to all of the […]

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UPCOMING EVENTS

Infantile Spasms Awareness Week - December 1 - December 7

HIE is the second leading cause of Infantile Spasms, a rare type of epilepsy that requires quick diagnosis and frontline treatments. The onset of Infantile Spasms is considered a medical emergency. We have developed comprehensive resources, in conjunction with the Infantile Spasms Action Network, to better educate our families, especially those in the first year of their HIE journey. Learn […]

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Cell Therapies and Early Detection of Cerebral Palsy Q&A with Dr. Atul Malhotra - December 7 @ 5:00 pm - December 7 @ 6:00 pm

Join us LIVE as Dr. Atul Malhotra — senior neonatologist at Monash Newborn, Monash Children’s Hospital and research academic in the Department of Pediatrics at Monash University — discusses research regarding the role of cell therapies in understanding and treating HIE, as well as various measures of early detection of Cerebral Palsy.

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Video Support Group: Loss Families - December 8 @ 8:00 pm - December 8 @ 9:00 pm

On Thursday, December 8th, join us for Hope for HIE’s video support group for loss families. Led by Hope for HIE’s licensed social worker, Vanessa, families will be engaged in a space of healing and hope, no matter where their journey may take them, connecting with others to build connections and support. These events will be hosted on a closed […]

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Video Support Group: Topic-Based Support for Parents [Pregnancy After HIE] - December 15 @ 8:00 pm - December 15 @ 9:00 pm

On Thursday, December 15th, join us for Hope for HIE’s support group session to connect about pregnancy after HIE! Led by Hope for HIE’s licensed social worker, Vanessa, families will be engaged in a space of healing and hope, no matter where their journey may take them, connecting with others to build connections and support. This event will be hosted […]

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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

Every day, we work relentlessly to partner with researchers 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 7,000 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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