December 2025

Hope Starts Here: Together for HIE Families

As 2026 comes to a close, there's so much to reflect on that we've accomplished in 2025 -- and my heart is filled with so much gratitude for the work we all get to do together to ensure no family faces HIE alone, and drive forward advocacy and research bringing brighter futures for our global HIE community.

I had the opportunity to attend the Children's Hospital Neonatal Consortium meeting in Denver, CO in November and bring Hustle to Hope to CHNC's attendees as the selected charitable partner organization. It was quite a time getting to Denver, but I made it! Dr. Danielle Barber is Denver-based, so I jumped at the invitation she extended to tour her HIE research lab, and see her mouse work in action. It was fascinating and inspiring.

Speaking of Hustle for Hope -- Hustle Hosts Wanted!

We are hosting our Hustle Host Q&A next week with Mary Boyle, program manager, and returning Hustle Hosts, so be sure to sign up here to get the details and join in.

Giving Tuesday: A Special Day of Hope

We kicked off our Holiday Giving Campaign on Giving Tuesday this week and it was humbling to see our community come together in so many wonderful ways. We shared family stories, highlighted community leaders and volunteers, and raised funds to continue our critical programs and services. Including the $3500 donation match our Board of Directors pledged, we were able to raise over $12,000 in a single day!

We continue next week with our 12 Days of Hope, so be sure to follow along on our social media channels, and our blog. Join in on supporting Hope for HIE -- with time, talent or financial support. It all makes a signficant difference to do this together.

Most sincerely,

Betsy

Betsy Pilon

Executive Director

Support Hope for HIE

Volunteer Spotlight

Say hello to Tina, one of our incredible Hope for HIE volunteers. She is an HIE Hospital Ambassador, Hustle for Hope 5K Host, and HIE Parent.

“We have been blessed with having valid information at the click of a button with Hope for HIE's Facebook page and website. Shortly after our diagnosis, we connected with Hope for HIE to find other families who get it. Fast forward 6 years and we are now the ones giving back with gratitude. Hope for HIE can be such a pivotal turning point for families healing and connection."

Your donation supports our ambassadors, peer mentors, and volunteers who walk alongside families every day. Give today to support our community leaders.

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Community Needs Assessment

Our team wants to make sure Hope for HIE’s programs meet the needs of our families and we've created a short needs assessment survey to help us learn what is working well, what could be better, and what our families need most right now.

The answers we receive will help us make our support programs even stronger and shape our programs and services to reflect the input from our community.

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Advocacy in Epilepsy Research

We are proud to share that Allison Moise, BSW, Program Coordinator at Hope for HIE and HIE parent, is featured in the cover story of the Epilepsy Foundation of America's Foundation Quarterly magazine.

The article showcases Allison’s powerful work to elevate the lived experience within research conversations and to ensure that patient and caregiver perspectives are represented at every stage of the research process. We look forward to supporting her continued efforts to advance meaningful, patient-driven research.

Each year, many organizations come together to promote awareness for Infantile Spasms through ISAW.

All week long we will be sharing educational resources, how to recognize infantile spasms, and what to do if you suspect them in your child.

Hope for HIE is working to further educate our community on the importance of accurate and quick identification, aggressive treatment, and follow up care to ensure our children have the best possible outcomes.

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The American Heart Association (AHA) and American Academy of Pediatrics (AAP) have released updated 2025 Guidelines for Neonatal Resuscitation, shaping how birth and neonatal teams respond in the crucial first minutes of life.

These updates strengthen evidence around cord management, refine resuscitation practices, and emphasize team readiness—all with the goal of improving outcomes for newborns, especially those at risk of hypoxic-ischemic encephalopathy (HIE).

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December 2-8 is Grief Awareness Week. With guidance from Annie Gunning, our Certified Child Life Specialist and Certified Grief Counselor, we have put together some resources to remind you that any feelings you have in this season are valid while also recognizing the range of emotions that can come near the holidays each year.

We've included some meaningful activities to honor and remember your loved one and some holiday books recommendations for grieving children.

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