December 2024

REAL CHANGE FOR HIE

WOW! What a year! I wrapped up the last travel presentation at the Hot Topics in Neonatology conference earlier this month, bringing the HIE community perspective to quality improvement in neonatology. There's no shortage of work to be done, but I'm always encouraged by the inroads we can make when we are in the room (armchair advocacy only takes you so far!).

We've shared countless stories of the incredible volunteers we have in our community, families giving back, and sharing support over on our blog this month. Hope for HIE even made its NFL debut!

I'm so proud of our entire community, our staff, our boards, and our FAMILIES who show up day after day with tenacity, heart, and HOPE to advance this critically important work.

Thank you for your continued support and engagement in the many ways we work to fulfill our mission, expanding to five critical areas of focus: Awareness, Advocacy, Education, Research and Support.

Wishing you all a very Happy, Healthy and Peaceful New Year in 2025.

Most sincerely,

Betsy

Betsy Pilon

Executive Director

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WRAPPING UP 2024: A TRANSFORMATIONAL YEAR

Because of the generosity of our global HIE community, sponsors like Medtronic and ReAlta Life Sciences, research partnerships, and our amazing staff at Hope for HIE, we are changing the course for children and families impacted by neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy.

Check out the end of year wrap up lovingly created by Deanna Bryan, program manager.

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HONORING CLAIRE'S LEGACY

Hope for the Holidays giveaway success

This December, our Hope for the Holidays giveaway program was lovingly sponsored by the Clapsaddle family.

HIE families were eligible to win different giveaway items aimed at improving family quality of life such as adaptive seating, bikes, gift cards and more. This also included special giveaways for our loss community.

You can learn more about Claire and her family on our blog.

LONG TERM FOLLOW UP GUIDELINES FOR HIE: WHAT'S NEXT?

We had OVER 120 child neurologists attend the Neonatal SIG session at the recent Child Neurology Society conference starting robust discussions stemming from the survey disseminated into our global community in October.

We are excited to continue this work in-person at the 2025 International Newborn Brain Conference at our lunch workshop held on Thursday, February 20 at 12 pm in La Jolla, California.

We are hoping to have around 10 HIE patient-families in attendance to bring robust multidisciplanary representation!

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Take Three: Awareness, Education, Support

December 1-7 is Infantile Spasms Awareness Week. HIE is the second leading cause of IS, a rare but aggressive type of epilepsy.

We recommend all newly diagnosed families with neonatal HIE get empowered to learn about their child's risk factors, learn about signs and symptoms and discuss with your medical team what to do if you suspect concerning movements.

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One of the most frequent topics with newly diagnosed families is what role MRI plays in their child's medical status, prognosis and HIE.

All of this can be quite confusing since 99.9% of our families are not trained neurologists.

We've put together a new educational resource on our blog for families to understand more.

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We had hundreds of Super Sibs join us this year through age and developmentally-appropriate programming for siblings of HIE children ages 3-17, facilitated through our Child Life Specialist and program manager.

It's time to renew memberships for 2025, update mailing address and sign up for new eligible sibs!

ALL returning families must reenroll annually to ensure we are compliant for grants and program logistics.