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

You’re Not Alone

THERE IS
ALWAYS HOPE

Connect

LATEST NEWS

When we talk about the roots of today’s HIE advocacy and research in the United States and wtih NIH funding, we turn to the story of Rosemary Kennedy—a young woman whose life forever changed her, her family, and in turn, the world. Born in 1918, Rosemary was the third child of Joseph and Rose Kennedy. Many experts believe Rosemary experienced […]

Read More

During HIE Awareness Month, we shine a light on the stories, people, and progress shaping our community. This week, we’re turning the spotlight toward the dedicated members of Hope for HIE’s Board of Directors and Medical Advisory Board — parents, professionals, and advocates who lend their time, talents, and expertise to guide our mission forward. We invited our Board of […]

Read More

We’re thrilled to reintroduce the 2025 SOAR program—now new and improved with a fully online experience through our Canvas platform! SOAR is a unique initiative designed to support children as they grow into their lives with HIE, helping them feel seen, supported, and connected. Developed by Annie Gunning, Hope for HIE’s certified Child Life Specialist, SOAR was created in response […]

Read More

Each year, HIE Awareness Month is a time to amplify voices, share stories, and build a stronger, more connected community. Our 2025 Awareness Month Ambassadors are parents, advocates, and changemakers who are dedicated to making a difference—raising awareness, offering support, and putting Hope in Action. In this special collection of letters, our Ambassadors share their journeys, challenges, and hopes for […]

Read More

Medical procedures can be overwhelming, especially for kids. But what if there was a simple way to make those moments feel less scary and much more manageable? That’s where comfort positions come in—they’re a small change that can give them enough security and support to shift stressful situations into moments of comfort and care. We met with Annie Gunning, CCLS, […]

Read More

Hope for HIE hosted its second workshop at the 2025 International Newborn Brain Conference in February, as a part of the process to develop long-term follow-up guidelines for neonatal Hypoxic Ischemic Encephalopathy, as no guidelines currently exist. Children with HIE often are only followed closely until age 2 or 3, and many will have developmental impacts into childhood and beyond. […]

Read More

Hope for HIE’s SuperSibs program has expanded! In its inaugural year in 2024, enrolled siblings received different drops in the mail with developmentally-appropriate cohorted support packages. These contained thoughtful and curated activities, fun and unique SuperSibs swag, as well as connection to SuperSibs Support Circles hosted by Annie Gunning, CCLS, Hope for HIE’s Child Life Specialist. For 2025, Annie Gunning […]

Read More

HIE AWARENESS MONTH IS COMING! APRIL IS RIGHT AROUND THE CORNER! We are excited to announce our annual global theme for 2025: HOPE IN ACTION. We look forward to sharing the many stories of how not only Hope for HIE and our volunteers, families, and staff are moving forward the advocacy landscape for HIE, but the many stories in our […]

Read More

Hope for HIE was recently awarded the NICU Parent Network Innovation Award for our Halo of Support longitudinal model for clinical trials at the NPN Leadership Summit held February 14 in Cleveland, Ohio. Matt Kegyes, Board of Directors Treasurer (pictured in the middle), attended the awards ceremony on behalf of Hope for HIE, networking with attendees, and celebrating the NICU […]

Read More

Last night, a talking point to discredit scientific spending in the United States was misused creating additional confusion surrounding research, and specifically research using mice to advance important therapeutics and understanding of diseases and conditions. HIE is no stranger to mouse models to advance research. The Vannucci model, funded by the NIH, sas been the “gold standard” for decades. That, […]

Read More

UPCOMING EVENTS

HIE 101: The Basics of Diagnosis and Care with Dr. Elizabeth Sewell - April 22 @ 1:00 pm - April 22 @ 2:00 pm

Join Hope for HIE on Tuesday, April 22nd, at 1:00 PM ET for a Q&A with Dr. Elizabeth Sewell, Neonatologist and Specialist in Neonatal-Perinatal Medicine, as we break down the critical steps in the diagnosis and immediate care of babies with HIE. In this session, Dr. Sewell will: 📌 Explain APGAR scores and what they reveal about a baby’s condition […]

Read More
Hope for HIE at the Pediatric Academic Society Meeting - April 24 - April 26

Hope for HIE will once again be attending the Pediatric Academic Society meeting, will have a booth in the advocacy area, is represented in presentations by Hope for HIE’s Executive Director, and posters that will be on display and presented in collaborative work with our partners. Stay tuned on Hope for HIE’s social media channels to stay updated with the […]

Read More
Hustle for Hope 5K: Oakdale, PA - April 26 @ 8:30 am - April 26 @ 11:30 am

Come Hustle for Hope in Oakdale, PA, and 5K Your Way! Whether you’re a family in our community, a friend, an advocate, a NICU or PICU team member, or a partner in hope, this is your chance to come together, show your support, raise awareness, and advocate for children and families impacted by HIE! 📌 Host: Amanda Pegher 📌 Location: […]

Read More
Hustle for Hope 5K: Chicago, IL - April 26 @ 9:30 am - April 26 @ 12:00 pm

Come Hustle for Hope near Chicago, IL, and 5K Your Way! Whether you’re a family in our community, a friend, an advocate, a NICU or PICU team member, or a partner in hope, this is your chance to come together, show your support, raise awareness, and advocate for children and families impacted by HIE! 📌 Hosts: Allison Spiaser-Pineda, Rebecca BurWei, […]

Read More
Hustle for Hope 5K: Aurora, CO - April 26 @ 10:00 am - April 26 @ 12:00 pm

ome Hustle for Hope in Aurora, CO, and 5K Your Way! Whether you’re a family in our community, a friend, an advocate, a NICU or PICU team member, or a partner in hope, this is your chance to come together, show your support, raise awareness, and advocate for children and families impacted by HIE! 📌 Hosts: Susanne Atwell-Keister, Jasmin Villalvazo, […]

Read More
Hustle for Hope 5K: Seattle, WA - April 26 @ 12:30 pm - April 26 @ 3:30 pm

Come Hustle for Hope near Seattle, WA, and 5K Your Way! Whether you’re a family in our community, a friend, an advocate, a NICU or PICU team member, or a partner in hope, this is your chance to come together, show your support, raise awareness, and advocate for children and families impacted by HIE! 📌 Host: Tina Santos 📌 Location: […]

Read More
Hustle for Hope 5K: Sparks, NV - April 27 @ 8:30 am - April 27 @ 12:30 pm

Come Hustle for Hope in Sparks, NV, and 5K Your Way! Whether you’re a family in our community, a friend, an advocate, a NICU or PICU team member, or a partner in hope, this is your chance to come together, show your support, raise awareness, and advocate for children and families impacted by HIE! 📌 Host: Jasmin Taylor 📌 Location: […]

Read More
Hustle for Hope 5K: Bristol, RI - April 27 @ 10:00 am - April 27 @ 12:30 pm

Come Hustle for Hope in Bristol, RI, and 5K Your Way! Whether you’re a family in our community, a friend, an advocate, a NICU or PICU team member, or a partner in hope, this is your chance to come together, show your support, raise awareness, and advocate for children and families impacted by HIE! 📌 Hosts: Nicole Allen & Michelle […]

Read More
Virtual A2: Boosting School Readiness for Infants with HIE - Q&A w/ Dr. Melisa Carrasco McCaul - April 28 @ 12:00 pm - April 28 @ 1:00 pm

Join Hope for HIE on Monday, April 28th at 12:00 PM ET for a LIVE Q&A with Dr. Melisa Carrasco McCaul from the Wisconsin TREES Lab to learn about Virtual A2 — a fun, play-based learning booster designed to support babies (6-12 months) born with HIE who may need extra developmental help to ensure school readiness.  In this session, she […]

Read More
Navigating Additional Diagnoses after HIE - Support - April 29 @ 12:00 am - April 29 @ 1:00 pm

Join Hope for HIE on Tuesday, April 29, at 12:00 PM ET for our video support group session for parents and legal guardians of children with HIE to discuss helpful ways to navigate and cope with additional diagnoses that arise after an HIE diagnosis.  ➡️ This closed Zoom meeting, led by Hope for HIE’s certified social worker, Jen, and peer […]

Read More

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.

SIGN UP HERE FOR MORE INFORMATION

Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.

  • This field is for validation purposes and should be left unchanged.

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.

Learn More

 

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.

Learn More

BOOK A
SPEAKER

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.

Book Now

SIGNUP

Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.

  • This field is for validation purposes and should be left unchanged.