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

You’re Not Alone

THERE IS
ALWAYS HOPE

Connect

LATEST NEWS

Representation for disability, HIE, and cerebral palsy in media — movies, books, and television — just got another boost. Netflix’s latest release, “Lucca’s World,” is a poignant drama that delves into the challenges and triumphs of a family navigating life with a child born with HIE, and diagnosed with cerebral palsy. The film is inspired by the real-life experiences of […]

Read More

Raising Awareness: Full-Term NICU Awareness Month February is Full-Term NICU Awareness Month, a time to shed light on the journeys of full-term babies who find themselves in the NICU, often unexpectedly. At Hope for HIE, we know that while Hypoxic Ischemic Encephalopathy (HIE) can happen across gestational ages, it primarily impacts full-term babies. This month, we’re focusing on the unique […]

Read More

Over the last several days, many concerns have been expressed in the United States and globally about several executive actions of the new leadership administration in the United States that could negatively impact, or are impacting, the HIE community in the United States and around the world.  While it is not uncommon in the first several weeks of a new […]

Read More

Navigating an HIE diagnosis can be overwhelming, and having the right support at the right time can make all the difference. From the moment of diagnosis and throughout every stage of their journey, families need reliable information, compassionate guidance, and a strong support network—no matter the impact or outcome. To ensure this, we are committed to building a team that […]

Read More

Hope for HIE is thrilled to welcome Jennifer Schaefer, CAPSW, to the team as our new Social Worker. Jen brings over 17 years of social work experience, with direct NICU experience spending the last seven years working for Children’s Hospital of Wisconsin’s Level IV NICU. In her role, Jen will be leading and managing support programming for HIE families, providing […]

Read More

Did you know there are currently ZERO published long-term follow up guidelines for neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy? Thanks to members of our Medical Advisory Board, and leadership of the Neonatal Special Interest Group through the Child Neurology Society, we have begun the process to start the development of long-term follow-up guidelines for HIE. We had OVER 120 child […]

Read More

The Jarett Family beautifully illustrates how connection and support can lead to meaningful moments that honor every unique HIE journey. At their wedding, Amelia’s aunt and uncle chose to forgo traditional wedding favors and instead made a donation to Hope for HIE in Amelia’s honor, with Amelia serving as the flower girl. To further raise awareness, a framed display with […]

Read More

We’re continually inspired by remarkable families like the Arnall Family, who have turned their personal journey with HIE into a powerful platform for raising awareness. Not only has Braedn been deeply involved in spreading awareness about HIE within his local gym community, but he has also made a significant impact as an HIE Awareness Month Ambassador. By sharing Hope’s informational […]

Read More

2024 was another incredible year for our organization — we are celebrating TEN YEARS as a confirmed charitable organization, growing from 200 families to now over 10,000 from 100+ countries! We’ve grown in nearly every way and have even officially expanded our mission to reflect the five pillars of service we dedicate to — Awareness, Advocacy, Education, Research and Support. […]

Read More

We’re constantly inspired by incredible families, like the Niblett Family, who have turned their experience with HIE into a powerful force for advocacy and support. Not only have Romm and his family become deeply involved in the research and advocacy space in Australia, but Romm also serves as a peer support mentor, offering guidance, connection, and support to other families. […]

Read More

UPCOMING EVENTS

Loss Support - February 13 @ 8:00 pm - February 13 @ 9:00 pm

Join Hope for HIE on Thursday, February 13th 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 our certified social […]

Read More
Heart & HIE Support - February 17 @ 12:00 pm - February 17 @ 1:00 pm

Join Hope for HIE on Monday, February 17th at 12:00 PM ET for a video support group for parents and legal guardians navigating the complexities of their child’s HIE diagnosis alongside heart-related challenges. ➡️ Led by our certified social worker, Jen, and facilitated by one of our Peer Support Mentors – Crystal – this closed Zoom meeting offers a safe […]

Read More
Oral Health Disparities: Q&A with Rachyl Adams, DDS Candidate - February 18 @ 12:30 pm - February 18 @ 1:30 pm

Join us for a live Q&A on Tuesday, February 18th at 12:30 PM ET with Rachyl Adams, DMD Candidate at Boston University Henry M. Goldman School of Dental Medicine, as she shares an update on oral health disparities research led by Matthew Mara, DDS. This session will explore:📌 The “whats” and “whys” behind dental disparities, specifically for those who have suffered […]

Read More
Extended Family Support - February 25 @ 12:00 pm - February 25 @ 1:00 pm

Join Hope for HIE on Tuesday, February 25th at 12:00 PM ET for our video support group designated for extended family members of children impacted by HIE. ➡️ This closed Zoom meeting, led by our certified social worker, Jen, provides a supportive space for grandparents, aunts, uncles, and other extended family members to connect, learn, and discuss ways to best […]

Read More
Seattle Local Resource Brainstorm - March 4 @ 7:00 pm - March 4 @ 9:00 pm

Join Tina Santos, Hope’s HIE Hospital Ambassador for Seattle Children’s, on Wednesday, March 5, at 7:00 PM PT for an informal Zoom session where families can drop in to brainstorm and gather input to build a sheet of local resources for HIE families, including programs like the WA Elks Therapy program and Emma’s Exceptional Equipment Exchange. This is a relaxed, […]

Read More
Hustle for Hope 5K: Warrington, PA - April 12 @ 9:00 am - April 12 @ 1:00 pm

Come Hustle for Hope in Warrington, 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: David Ford 📌 Location: […]

Read More
Hustle for Hope 5K: Charlotte, NC - April 12 @ 11:00 am - April 12 @ 1:00 pm

Come Hustle for Hope in Charlotte, NC, 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: Mikaela Maddock, Gwendolyne Miller, […]

Read More
Hustle for Hope 5K: Madison, WI - April 12 @ 2:00 pm - April 12 @ 4:00 pm

Come Hustle for Hope in Madison, WI, 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: Kacie Miller and Sarah […]

Read More
Hustle for Hope 5K: Albuquerque, NM - April 13 @ 8:30 am - April 13 @ 11:30 am

Come Hustle for Hope in Albuquerque, NM, 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: Ryann Sherman 📌 Location: […]

Read More
Hustle for Hope 5K: Peloton Bike - April 19 @ 11:00 am - April 19 @ 11:20 pm

Come Hustle for Hope on your Peloton Bike 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: Deanna Bryan and […]

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.