March 2025

HOPE IN ACTION

It's been amazing to connect with so many in our community, both on and offline over the last month as we gear up for the busiest time of the year for Hope for HIE -- April's HIE Awareness Month! It's befitting that we chose Hope in Action as the global theme this year, because so much is non-stop on all fronts: awareness, advocacy, education, research and support.

From hosting an over-capacity crowd for our long-term follow-up workshop at the International Newborn Brain Conference to launching Hustle for Hope virtual and in-person events (early bird registration ends this Saturday -- be sure to REGISTER NOW!) to our ambassadors, staff, and families advocating in every corner of the globe for our children and families... there's no shortage of movement.

We hope you'll join us in one of the many events planned, grab some awareness month swag, and spread the word about HIE and the work we do through Hope for HIE. I'm immensely proud of our team, and the work we are able to do with the continued support of so many.

Now, more than ever, we need community, and we have the very best one.

Most sincerely,

Betsy

Betsy Pilon

Executive Director

Support Hope for HIE

INNOVATION AWARD

Hope for HIE is the proud recipient of the 2025 NICU Parent Network Innovation Award for our Halo of Support model for clinical trials and research studies.

This work is making a significant difference in moving forward research and therapeutic advancement by integrating comprehensive support from the very beginning for HIE families!

Matt Kegyes, Hope for HIE's board treasurer, proudly accepted the award in February.

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PEDIATRIC-ACQUIRED HIE RESEARCH WORKGROUP FORMING

Debra Curran and Betsy Pilon had the opportunity to speak at a recent symposium in conjunction with the Pediatric Neurocritical Care Research Group, elevating the unmet needs of our pediatric-acquired HIE community.

The research group is now forming a multidisciplanary workgroup to set the priorities for future research for pediatric-acquired HIE.

This is long overdue, and we hope if you have this experience, you'll consider getting involved.

2025 SUPERSIBS PROGRAM EXPANDS

For 2025, Annie Gunning and program manager, Deanna Bryan, developed a new and exciting way for SuperSibs to interact, engage with activities and have their own virtual hangout space using a platform called Canvas. Sibs will still receive the occasional mail drop (because who doesn’t love mail??), but this allows more connections to be formed and interaction with same-age siblings to form friendships!

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Take Three: Awareness, Education, Support

2025's HIE Awareness Month is more important than ever to take on our community call for HOPE IN ACTION.

We'll be sharing ways to advocate for our communities unmet needs, including educational, disability, healthcare and research initiatives to ensure our families have the important support they need to thrive.

Be sure to download the toolkit and let us know how YOU are HOPE IN ACTION!

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Research in mouse models recently took the national stage in the United States, and also created confusion.

Mouse models, and other preclinical (before it goes to humans) research is essential for new therapeutic discoveries and unlocking the mechanisms of HIE and its impacts for a brighter future for children and families facing HIE.

You can learn more about the history of research, and how to protect it below.

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