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 […]

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 […]

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 […]

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 […]

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, […]

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. […]

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 […]

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 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 […]

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, […]