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

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SuperSibs Program Expands to Virtual Immersive Experiences

SuperSibs Program Expands to Virtual Immersive Experiences

March 7th, 2025  | News  | Resources  | Sibling Support

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 […]

Get Ready for April – HIE Awareness Month

Get Ready for April – HIE Awareness Month

March 7th, 2025  | Advocacy  | News

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 […]

Hope for HIE’s Halo of Support wins Innovation Award

Hope for HIE’s Halo of Support wins Innovation Award

March 6th, 2025  | News  | Research

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 […]

Of Mice and Men: Therapeutic Hypothermia and HIE Research

Of Mice and Men: Therapeutic Hypothermia and HIE Research

March 5th, 2025  | Advocacy  | News  | Research

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, […]

Rare Disease Day – Representing in Seattle

Rare Disease Day – Representing in Seattle

March 3rd, 2025  | Advocacy  | News

Is HIE rare or not? That is a common question! The answer, as usual with HIE, is not a clear yes or no but rather a sometimes or maybe, or depends on the context and who you ask. HIE itself is typically not considered rare, impacting roughly 2-3 per 1,000 live births in high-income countries (which is considered rare in […]

SHARE YOUR HIE STORY

One of the ways many HIE families work through the trauma of their journey is sharing their story to help other families who will find us in their own HIE journey. We hope you’ll take a few minutes and share yours with us. We’ll publish it to our Family Stories blog!

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