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

You’re Not Alone

THERE IS
ALWAYS HOPE

Connect

LATEST NEWS

It’s no secret that many people have some aversion to the dentist; those connected to medically complex children are likely even more familiar with the challenge of maintaining oral health and accessing professional care. Dr. Matt Mara, DDS., a practicing general dentist, assistant professor of general dentistry at Boston University, oral health researcher, Hope for HIE medical advisory board member, […]

Read More

Does your child have seizures or epilepsy? Are they on anti-seizure medication? You need a Seizure Action Plan! Seizure Action Plan Awareness Week highlights the importance of having a seizure action plan in place. The awareness campaign is supported by the Seizure Action Plan Coalition. What is a Seizure Action Plan? A Seizure Action Plan – or SAP – incorporates tailored […]

Read More

You may have noticed we are spotlighting the patient-family experience of impacts to dental and oral healthcare, and you’re right! Children with HIE are at greater risk for certain oral health impacts, and in the context of disability, there is a significant disparity experienced by medically complex children and families to access the same care as typically developing children. You […]

Read More

February is Heart Month and Congenital Heart Defect Awareness Month. As with every other system in the body, Neonatal and Pediatric-acquired Hypoxic Ischemic Encephalopathy (HIE) can also impact cardiovascular health and function, and there’s also an overlap with Congenital Heart Defects and HIE (as well as other types of brain injury). HIE can negatively impact the cardiovascular system, either transiently […]

Read More

February is #FullTermNICU awareness month. The majority of #HIE babies are born full term. Does it surprise you to learn that around 50% of #NICU babies are full term? There is a significant disparity in representation of full term families in #Neonatology research, family-centered care leadership, and QI. 99% of NICU family advisory councils are made up of #Preemie parents. […]

Read More

It has been a busy week of new research being published and shared, and while we regularly share these in our Advocacy & Research group, this week seemed like a good time to post in one easily accessible area. As always, we share relevant research that is focused on the many aspects of HIE — decreasing the impact and incidence […]

Read More

We don’t know about you, but we think it’s time to recognize, celebrate, and empower the unsung HIEroes of the HIE community — the brothers and sisters who stand strong alongside their HIE siblings and those they remember who have passed. Sometimes, our Super Sibs can bear a significant load: they are asked to take on a lot, go forth […]

Read More

As any parent may attest, there are times throughout the year when supporting your child’s schoolwork can cause stress. After all, when — no — why did they change math? As a parent or caregiver of a medically complex child who may undergo several planned or unplanned hospitalizations, you may know all too well the stress that comes with navigating […]

Read More

As we close out 2023, it’s amazing to take a moment before digging into our full, comprehensive Impact Report and looking at the HIElights of a banner year for our organization. It included a significant investment and expansion of our support programs and services, advocacy and collaboration in research. Without your support, we cannot do this work. Take a look […]

Read More

Hope for HIE was thrilled to talk to our Medical Advisory Board member, Dr. Adam Numis (pediatric neurologist and epilepsy specialist), to learn about updates regarding several Neonatal Seizure Registry (NSR) studies. These studies — some of which have concluded and others which are still in progress — will help us understand neonatal seizures, their relationship with HIE, and the […]

Read More

UPCOMING EVENTS

Newly Diagnosed Support (March 2024) - March 7 @ 8:00 pm - March 7 @ 9:00 pm

Join Hope for HIE on Thursday, March 7th at 8:00 PM EST for our 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 our peer mentors – Khadijah – families […]

Read More
Loss Families Support Group (March 2024) - March 14 @ 8:00 pm - March 14 @ 9:00 pm

Join Hope for HIE on Thursday, March 14th at 8:00 pm EST, 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 […]

Read More
Support for HIE Dads - March 18 @ 12:00 pm - March 18 @ 1:00 pm

Join Hope for HIE on Monday, March 18th at 12:00 PM EST for our video support group designated for our HIE dads. ➡️ This support session is led by Hope for HIE’s licensed social worker, Haley, and is facilitated by one of our peer mentors – Brandon – who will help lead families in a space of support, healing, connection, […]

Read More
Navigating Dystonia - HIE Peer Perspectives Series - March 20 @ 1:00 pm - March 20 @ 2:00 pm

Join Hope for HIE on Wednesday, March 20th at 1:00 PM EST for the next installment of the HIE Peer Perspective Series, where we’ll discuss how to navigate dystonia. ➡️ 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 – Clarissa, an HIE Parent, and […]

Read More
Peloton Tread Hustle for Hope Event - April 13 @ 10:00 am - April 13 @ 10:30 am

IT’S TIME TO HUSTLE FOR HOPE! On April 13th, join Hustle Host Erica Hicks and other community members for a Hustle for Hope Peloton Tread session! 📌 Starting at 10:00 AM PST, take this 30-minute Run with Adrian that aired on 12/16/22: TinyURL.com/HustleforHopePelotonRun 📌 Be sure to add #HustleForHope5K to your Peloton profile before you begin! HOW TO REGISTER: 📌 […]

Read More
Peloton Bike Hustle for Hope Event - April 13 @ 10:40 am - April 13 @ 11:00 am

IT’S TIME TO HUSTLE FOR HOPE! On April 13th, join Hustle Host Erica Hicks and other community members for a Hustle for Hope Peloton Bike session! 📌 At 10:40 AM PST, take this 20-minute Classic Rock Ride with Emma that aired on 12/16/21: TinyURL.com/HustleforHopePelotonRide 📌 Be sure to add #HustleForHope5K to your Peloton profile before you begin! HOW TO REGISTER: […]

Read More
Cherry Hill, NJ Hustle for Hope 5K Event - April 14 @ 10:30 am - April 14 @ 1:00 pm

IT’S TIME TO HUSTLE FOR HOPE! We are hosting an in-person event at Challenge Grove Park (Jake’s Place) on Sunday, April 14th from 10:30 AM to 1:00 PM EST in Cherry Hill, NJ — just outside of Philly! Complete the 5K YOUR way and meet local families along the way! HOW TO REGISTER: 📌 Starting February 15th, you can register […]

Read More
Aurora, CO Hustle for Hope 5K Event - April 20 @ 9:00 am - April 20 @ 12:00 pm

IT’S TIME TO HUSTLE FOR HOPE! We are hosting an in-person event at Red Tailed Hawk Park on Saturday, April 20th from 9 AM to 12 PM MST in Aurora, Colorado! Complete the 5K YOUR way and meet local families along the way! HOW TO REGISTER: 📌 Starting February 15th, you can register specifically for this in-person event on our […]

Read More
Chalfont, PA Hustle for Hope 5K Event - April 20 @ 10:00 am - April 20 @ 12:00 pm

IT’S TIME TO HUSTLE FOR HOPE! We are hosting an in-person event at Lions Pride Park in Chalfont, PA on Saturday, April 20th from 10 AM to 12 PM EST. Complete the 5K YOUR way and meet local families along the way! HOW TO REGISTER: 📌 Starting February 15th, you can register specifically for this in-person event on our registration […]

Read More
Sparks, NV Hustle for Hope 5K Event - April 21 @ 8:30 am - April 21 @ 12:30 pm

IT’S TIME TO HUSTLE FOR HOPE! We are hosting an in-person event at Sparks Marina Park on Sunday, April 21st from 8:30 AM – 12:30 PM PST in Sparks, Nevada! Complete the 5K YOUR way and meet local families along the way! HOW TO REGISTER: 📌 Starting February 15th, you can register specifically for this in-person event on our registration […]

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 8,500 families, 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.