June 2025

 

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How to: Scale a Nonprofit!


We are moving into Summer and turn our focus in our operations to build out sustainable systems and processes. This is essential as our organization grows and scales the extensive programs, services and projects we have advancing our mission.


We are so grateful for the continued support, and for new support and volunteerism from our incredible community. Special thanks to Allen Hankins who has been bringing his skill set in scaling start ups and organizations to advising us through this process.


Our hope is to have a more cohesive, sustainable, efficient, scalable, and engaging experience for anyone who is connected to Hope for HIE. So, stay tuned!


If you are interested in making a gift to help us with this capacity building, or have connections to grant funders who do, please reach out!




Most sincerely,

Betsy


Betsy Pilon

Executive Director

Newly Diagnosed Family Support Group

1st Thursday of every month at 8 pm ET

Register Here


Loss Family Support Group

2nd Thursday of every month at 8 pm ET

Register Here


Navigating Vacation & Travel: Peer Perspective Series

June 17 @ 12:00 pm ET

Live on Social Media


Explaining HIE to Your Child

June 18 @ 12:00 pm ET

Live on Social Media


Pregnancy After HIE: Dads and Non-Birthing Partners

June 19 @ 8:00 pm ET

Register Here


Traveling with Children with HIE: Support Group

June 24 @ 12:00 pm ET

Register Here

 
 
 

Staff Update: Welcoming Maggie Jalowsky


We are so excited to welcome Maggie Jalowsky to Hope for HIE's staff in the Clinical Research Program Manager role.


Maggie comes to us with experience building research and advocacy platforms for organizations like Children's National, PCORI, and most recently Sick Cells patient advocacy organization.

 
 

Medical Advisory Board Leadership Update

Dr. Alexa Craig has been appointed as Chair of the Medical Advisory Board, and Dr. Brian Kalish will serve as Vice Chair for two year terms effective June 1, 2025.



Both leaders bring a deep commitment to advancing care and outcomes for infants, children and families affected by hypoxic ischemic encephalopathy (HIE), as well as decades of combined experience in clinical care and research.

 
 
 

Hustle for Hope Awards: Celebrating Our Community

Hustle for Hope 2025 was another record-setting year of community, awareness, connections, and raising critical funds to accelerate Hope for HIE's mission, funding support programs and services for our global community of over 10,000 families worldwide.


You are ensuring no family faces HIE alone!


We had over 1,000 registrants around the world, hosted 13 local events, and raised just over $100,000! Learn more about the standout teams, hosts and sponsors:

 
 

Take Three: Awareness, Education, Support

Were you referred to as Mom or Dad in the NICU?


As a part of the Family-Centered Care Neonatal Task Force, Hope for HIE contributes input to improve the experiences from our community.


Recently published in Neonatology Today, this peer-reviewed article dives into equity in care and involvement of parents in their child's care while in the NICU shifting the paradigm to parents as partners, not visitors.

One of the most common questions from parents as they navigate raising a child with HIE, across the wide spectrum of outcomes, is how to talk to them about their NICU or PICU stay, rough start to life, and their child's medical history.


Annie Gunning, child life specialist, will be discussing developmentally appropriate ways to tackle this topic in a LIVE Q&A on Tuesday, June 18 at 12 pm ET across Hope for HIE's social media channels.

Many families are sending their HIE children to day or overnight camps this summer. Some may not be ready yet, but wonder how all of this works for kids with differences and disabilites.


In May, we welcomed Angela Bryan, child life specialist and trauma and safety coordinator to share her knowledge to empower parents in evaluating and preparing for a great camp experience!



 
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CONTACT US

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Outreach@hopeforhie.org


PO Box 250472

West Bloomfield Township

Michigan 48325

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