May 2025

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HOPE IN ACTION -- A Calling


As we transition out of our 10th annual HIE Awareness Month, and into May -- Mental Health Awareness Month -- there is so much that we built, witnessed, shared, and grew this year showing Hope in Action.


Whether it was through one of our 12 in-person Hustle for Hope events connecting over 1,000 people, meeting with legislators and advancing important advocacy for better maternal and infant care, presenting and showcasing the work we do at the Pediatric Academic Society meeting, witnessing thousands of families lift one another up and build on peer support, visiting NeuroNICUs and seeing our support and educational materials integrated right from the start of a patient-family arriving for cooling, or announcing new important research taskforces and partnerships, it has been a busy and rewarding time.


HUGE thank you to Deanna Bryan and Stephanie Sikorski who managed all of our social media educational posts and events, Hustle for Hope coordination with volunteers and keeping things moving!


"The little foundation that could" is really busting at the seams with the growth and work that so many of us dreamed was possible, and I think it's fair to say we aren't little anymore -- connecting and supporting over 10,000 families worldwide.


13 years ago when my son Max was born, families had to search deep into the internet to find one another. As I toured the Children's Hospital of Michigan NeuroNICU earlier in the month, families are connected to support and educational resources from the first moments of their journey.


But there's still more to do!


We are at a pivotal point where we are building in the framework, processes and resourcing to help us meet this need, accelerate our mission further, and make even bigger changes globally in the pursuit to decrease the incidence and impact of HIE.


Your continued support makes this possible.


On behalf of everyone at Hope for HIE, THANK YOU, and let's continue with the spirit of Hope in Action!


Most sincerely,

Betsy


Betsy Pilon

Executive Director

Support Hope for HIE

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


HIE Acquired in Childhood Support Group

May 13 @ 8 pm ET

Register Here


Peer Support Open Office Hours

May 14 @ 12:00 pm ET

Register Here


Navigating Grief & Trauma Support Group

May 14 @ 8:00 pm ET

Register Here


BIPOC Family Support Group

May 15 @ 8:00 pm ET

Register Here

 
 
 

The Story Doesn’t End When the Hospital Bracelet Comes Off.


Pediatric nurse, medical play company founder, HIE parent: Mary Jenner shares her reflection on her experience as a clinician, the shared humanity in facing HIE, and the power of medical play for children, including siblings, to better understand medical situations and care to decrease fear and stigma, and increase confidence.

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Building Tables, Breaking Barriers for HIE Research and Development

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.

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GRAND OPENING! SOAR & SUPERSIBS VIRTUAL HANGOUT EXPERIENCES

Our virtual tour and grand opening of the SOAR and SuperSibs Virtual Hangouts is now LIVE! Both programs have new spaces and ways to connect in their respective programs.


Child Life Specialist, Annie Gunning, CCLS, GC-C and Program Manager (and former teacher), Deanna Bryan, worked with HIE families and children to launch these new and innovative ways to foster connections and support for children living with HIE ages 7-17, and siblings of HIE children from 0-17.

Take a Tour
 
 

Take Three: Awareness, Education, Support

May is Mental Health Awareness month -- upwards of 40-50% of all HIE parents, moms, dads, and non-birthing partners, will be diagnosed with some impact to their mental health.


Common diagnoses include PTSD, anxiety and depression.


Learn more about the resources, support and educational offerings we have -- all families deserve to feel their best and get the support they need for their journey with HIE.


LEARN MORE

We were joined by neonatal MRI expert Dr. Terrie Inder in our recent educational Q&A during HIE Awareness Month.


Dr. Inder addressed the most common questions families have when it comes to MRI -- what can it mean for their child's prognosis? Is timing important? What value can repeat MRIs have? What is the emerging research and best practices for MRI with HIE?


Be sure to read the blog or the full video on our YouTube channel.

LEARN MORE

Did you know we have an OnDemand Peer Support Mentor program?


For families who just want to talk to someone in a 1:1 conversation with parents and families who have "been there", we offer 1:1 OnDemand connections!


Want to sign up and learn more? Head over to our website and read all about the program, or come to our upcoming Office Hours to learn more about all of the support programs we offer to HIE families.

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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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