Jan/Feb 2024

2024: A YEAR TO CREATE HOPE

This year, we want to celebrate our community's ability to CREATE HOPE through resilience, strength, and connection in facing challenges and uncertainty.

We know that hope is not limited to one definition, but a lens to view life through where each inchstone forward is worthy of celebration and where every shared moment becomes a source of strength.

We kick off the first conference of the year this month at the International Newborn Brain Conference in Cork, Ireland. Many of our Medical Advisory Board members, Board of Directors, and local Hope for HIE families will come together to build stronger connections and elevate the lived experiences of the global HIE community.

Hustle for Hope registration opens in just a few days - so be sure to join us beginning February 15 and look at the many virtual and in-person options we are hosting this year!

We also are focusing on Children's Dental Health Month, collaborating with Dr. Matt Mara, dentist, HIE dad, professor and researcher with Boston University, to capture the unmet needs of the HIE community with oral and dental care.

Here's to a year of building, advocating, empowering, and growing together – CREATING HOPE in every step of the way.

Betsy

Betsy Pilon

Executive Director

Support Hope for HIE

GET READY FOR THE 2024 HUSTLE FOR HOPE 5K!

Can you believe registration for our annual 5k event opens on February 15th? We have already had more than 25 community members express interest in becoming a Hustle Host to put on a local event in your area! Be on the lookout for more details, coming soon!

HUSTLE FAST FACTS

BECOME A HUSTLE HOST

BECOME A SPONSOR

COMMUNITY-DRIVEN RESEARCH: ADDRESSING DENTAL DISPARITIES

You may have noticed we are spotlighting the patient-family experience of impacts to dental and oral healthcare, and you’re right! Children with HIE are at greater risk for certain oral health impacts, and in the context of disability, there is a significant disparity experienced by medically complex children and families to access the same care as typically developing children.

You can help shape this research by filling out the survey below:

TAKE SURVEY

JOIN OUR SUPER SIB SQUAD!

In the past month alone, we have had more than 250 Super Sibs sign up to be part of our program! Created by our own Child Life Specialist, Annie Gunning, this program gives developmentally appropriate tools, activities, and resources to our siblings to help them share their feelings, build connections with other siblings who just get it, and recognize and share their own gifts with their family! We also have special kits just for sibs who have lost a sibling to HIE.

SUPER SIB SIGN UP

SUPER SIB FAQ

CHILD LIFE RESOURCES AT YOUR FINGERTIPS

Hope for HIE's Annie Gunning, CCLS equipped our parents, caregivers, educators, and hospital staff with tools and resources to support your child's education throughout hospitalization!

TAKEAWAY BLOG

TAKEAWAYS AT-A-GLANCE

CHILD LIFE PLAYLIST

Take Three: Awareness, Education, Support

Last week, three important HIE-related research articles got published on advancements in diagnostic testing that could lead to targeted treatments, an analysis of neonatal outcomes for COVID vaccination during pregnancy, and analysis of optimal monitoring during labor and delivery for decreasing the prevalence of HIE.

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Does it surprise you to learn that around 50% of #NICU babies are full term? There is a significant disparity in representation of full term families in neonatology research, family-centered care leadership, and QI. 99% of NICU family advisory councils are made up of #Preemie parents. But we are working to change that!

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Does your child have seizures or on seizure medication? Do they have a Seizure Action Plan? They should! This week is Seizure Action Plan awareness week, and as a member organization of the SAP Coalition, we encourage all families to develop a seizure action plan and discuss it with your child's care, school and medical teams.

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