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

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LATEST NEWS

Dear Hope for HIE community, 2022 was the biggest growth year yet for our “little organization that could and does”. I’m not sure we can say we are little anymore! This year, we were able to grow to serve thousands more families and accelerate advocacy and research — something we’ve been dreaming about for many years. Because of the incredible […]

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Neural stem cells, mesenchymal stem cells, induced pluripotent stem cells, oh my! These may be intimidating terms, but with Dr. Atul Malhotra’s help, they don’t have to be! A neonatologist at Monash Newborn, Monash Children’s Hospital and research academic at Monash University, Dr. Malhotra joined Hope for HIE in a live Q&A to break down the complex topics of cell […]

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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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UPCOMING EVENTS

Video Support Group: Newly Diagnosed Families - February 2 @ 8:00 pm - February 2 @ 9:00 pm

Join Hope for HIE’s February Support Group session for families NEW TO HIE [within one year of diagnosis].  Led by Hope for HIE’s licensed social worker, families will be engaged in a space of healing and hope, no matter where their journey may take them, talking with others to build connections and support.  This event will be hosted on a […]

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Summer Camp Q&A with Franki Bagdade, M. ED. LLMSW - February 3 @ 12:00 pm - February 3 @ 1:00 pm

Join us LIVE on Facebook on Friday, February 3rd at 12:00 P.M. EST as we speak with Franki Bagdade, M. ED. LLMSW about finding the perfect fit for your child’s summer camp experience! Throughout this Q&A, she’ll answer how to start looking for camps, what important questions to ask before enrolling, and how to start prepping your child/family for the […]

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

Join Hope for HIE’s February Support Group session for loss families.  Led by Hope for HIE’s licensed social worker, families will be engaged in a space of healing and hope, no matter where their journey may take them, talking with others to build connections and support.  This event will be hosted on a closed Zoom meeting experience and is scheduled […]

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Video Support Group: Communicating Needs with Others - February 16 @ 8:00 pm - February 16 @ 9:00 pm

Join Hope for HIE’s February Support Group session to connect about communicating your and your family’s needs to others.  Led by Hope for HIE’s licensed social worker, families will be engaged in a space of healing and hope, no matter where their journey may take them, talking with others to build connections and support.  This event will be hosted on […]

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Video Support Group: Dads and Non-Birthing Partners - February 23 @ 8:00 pm - February 23 @ 9:00 pm

Join Hope for HIE’s February Support Group session for dads and non-birthing partners! Led by Hope for HIE’s licensed social worker, families will be engaged in a space of healing and hope, no matter where their journey may take them, talking with others to build connections and support.  This event will be hosted on a closed Zoom meeting experience and […]

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Measuring Clinical Benefit in Neonatal Randomized Clinical Trials: Challenges & Opportunities - March 23 @ 9:00 am - March 23 @ 4:30 pm

Hear from clinicians, researchers, industry and patient advocacy organizations — including Hope for HIE’s Executive Director, Betsy Pilon, at the Duke Margolis Center for Health Policy event, in conjunction with the FDA. This event will be held online via Zoom, or in-person in Washington, DC at the National Press Club. Learn more, or register, below: Learn More

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HIE Awareness Month - April 1 - April 30

April is HIE Awareness Month! We will be sharing our comprehensive toolkit, calendar of events, and opportunities to dig into advocacy, awareness, education and support to improve the quality of life for children and families impacted by neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy. Learn More

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HIE Remembrance Day - April 20 - April 20

Each year on April 20th, we recognize, remember, mourn, and honour our HIE children who have passed away. We honor their families and their memories through a worldwide wave of light.

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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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