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

You’re Not Alone

THERE IS
ALWAYS HOPE

Connect

LATEST NEWS

March is Cerebral Palsy Awareness Month, and who better to break down this topic than Dr. Edward Hurvitz, a Physical Medicine & Rehabilitation Physician/Physiatrist at the University of Michigan? He recently joined Hope for HIE LIVE to discuss the diagnostic journey of cerebral palsy, the multiple pathways of care available to those with CP, and the integral role a PM&R […]

Read More

Hope for HIE is growing, and we are so proud to be able to offer even more support services, programs, and opportunities for our community. As of February, Annie Gunning, Certified Child Life Specialist, joined Hope for HIE to provide Child Life services to our HIE families worldwide. Working for over 22 years in both the inpatient and community setting, […]

Read More

HIE Awareness Month is coming up quickly in April, and we are excited to showcase the diversity of our community throughout the month. One of the ways we are doing this is through our HIE AWARENESS MONTH AMBASSADOR PROGRAM. We are hoping to engage about 10-12 Ambassadors for the month, and will confirm our ambassadors by Monday, March 6, 2023. […]

Read More

Summer camp experiences should be for everyone! There are many different experiences and options for kids to have an overnight or meaningful day camp experience across the range of outcomes and impacts from HIE. Finding the right camp experience can be an overwhelming and stressful process, or something parents might not even know is possible, but it doesn’t have to […]

Read More

We are excited to welcome Dr. Danielle Guez Barber, accomplished pediatric neurologist, researcher and HIE mom, to our governing Board of Directors. Dr. Barber has been serving on Hope for HIE’s Medical Advisory Board since 2020, and will continue to leverage her multiple skill sets and perspectives to the overall strategic direction of the foundation. Danielle Guez Barber, MD PhD […]

Read More

Rachel Ramnarine is joining Hope for HIE for a winter internship. Rachel will be working on HIE Awareness Month initiatives, such as the social media campaign, HIE Awareness Ambassador program, and related promotion. She is a senior at the University of Miami in Florida, majoring in Communication, with a minor in Health Communication, set to graduate this May. She brings […]

Read More

The 2023 International Newborn Brain Conference held February 8-11 in Clearwater, FL brought together the leading experts in neonatal neurology, from 59 different countries. Hope for HIE’s global community was well-represented throughout the conference. In partnership with organizations like TREND Community, researchers from Maine Medical Center, and Joe DiMaggio Children’s Hospital, the HIE patient and family perspective were woven into […]

Read More

Annie Gunning, CCLS, is joining Hope for HIE to provide Child Life services for our Hope for HIE community. Annie has been a certified Child Life Specialist for over 22 years in both the inpatient and community setting. She is available to support the entire family system through child life interventions that aim to minimize the immediate and long-term effects […]

Read More

We are excited to share the 2022 Hope for HIE Impact Report: Interactive Document: Printable PDF:

Read More

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 […]

Read More

UPCOMING EVENTS

2023 Hope by the Beach Registration - March 18 - April 1

Join up with other HIE moms to connect, relax and learn together by the beach in beautiful St. Pete Beach, FL. We are excited to restart in-person events, and hope you can make it! Registration ends April 1st, so don’t miss out! Learn more and register below: Register Now

Read More
Parent & Provider Happy Hour: Washington DC - March 22 @ 5:00 pm - March 22 @ 7:00 pm

Join us for an in-person Parent Night Out/Meet and Greet for DC-area HIE parents & providers. Register Now

Read More
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

Read More
HIE Awareness Month - April 1 - April 30

April is HIE Awareness Month! Download 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

Read More
Live Q&A: HIE Overview and Research Updates with Dr. Pia Wintermark - April 5 @ 10:00 am - April 5 @ 11:00 am

JOIN US LIVE FOR AN HIE OVERVIEW AND RESEARCH UPDATE! On Wednesday, April 5 at 10:00 am EST, Dr. Pia Wintermark, neonatalogist at Montreal Children’s Hospital and associate professor of neonatal neurology at McGill University, will help us kick off our first Q&A for HIE Awareness Month by reviewing the basics of HIE and relevant updates in the field of […]

Read More
NICU Lived Network Social Media Q&A - April 5 @ 10:00 pm - April 5 @ 10:30 pm

Betsy Pilon will be interviewed on the NICU Lived Experience platform to discuss how as parents in Hope for HIE, we’ve been able to advocate to move forward research for HIE in the NICU and beyond. You can find NICU Lived Network across social media: @NICUlivednetwork.

Read More
General Registration ends for Hustle for Hope 5K - April 15 @ 12:00 am - April 15 @ 11:59 pm

The race can be completed anytime from April 1st through May 31st!  Grab some friends and family, pick a time and place, or attend one of our in-person events to share support, awareness, and advocacy for children and families impacted by HIE! Registration Link: Tinyurl.com/HustleforHope General Registration [$30] ends tonight at 11:59 pm!  

Read More
Hustle for Hope -- Doylestown, PA - April 15 @ 10:00 am - April 15 @ 12:00 pm

IT’S TIME TO HUSTLE FOR HOPE! Our community members are hosting an in-person event at the Pavilion at Joseph E. Hanusey III Community Park on April 15th from 10:00 am to 12:00 pm! Complete the 5K YOUR way and meet local families along the way! Registration:  You can register specifically for this in-person event on our registration site: tinyurl.com/HustleforHope If you’ve […]

Read More
Hustle for Hope - Seattle, WA Area - April 15 @ 2:00 pm - April 15 @ 5:00 pm

IT’S TIME TO HUSTLE FOR HOPE! Local community members are hosting an in-person event at “The Den” at Maple Valley’s Community Center on April 15th from 2:00 pm to 5:00 pm! Complete the 5K YOUR way and meet local families along the way! Registration Details:  You can register specifically for this in-person event on our registration site: tinyurl.com/HustleforHope If you’ve already […]

Read More
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.

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

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.

Contact Us

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.