October 2024

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REAL CHANGE FOR HIE


There is never a shortage of work in building Hope for HIE and advancing our mission. It's incredible to see our continued growth, new research and projects to do what we wish had been done decades before us!


However, staying present and moving these things forward is exciting, and transformational for the global HIE community.


Hope for HIE is bustling at the seams providing comprehensive support programs and services, advancing advocacy priorities, and working on filling critical data gaps that hinder patient and family education and understanding of HIE, as well as long-term research.


Nearly four years ago, I took this role as the first and sole employee of Hope for HIE. Four years later, we have grown by leaps and bounds and I'm thrilled in this newsletter to share some important updates below on staff additions, our hospital ambassador pilot program, developing long-term follow-up guidelines of care, and resources for families facing natural disasters.


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.


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


Loss in Childhood Support Group

October 16 @ 12 pm ET

Register Here


Seattle Area: Family Walk in the Park

October 25 @ 12:30 pm PT

Register Here


NEW! Peer Support Mentors Virtual Office Hours

October 29 @ 12 pm ET

Register Here


 
 

Staff Update - Welcoming Gina & Stephanie

Hope for HIE is thrilled to welcome two team members to support the organizations mission: Gina Abraham, MS, as Clinical Research Program Manager, and Stephanie Sikorski as Program Coordinator.

Gina Abraham, MS Clinical Research Program Manager

Gina brings years of experience as a clinical research coordinator for C.S. Mott Children’s Hospital in Ann Arbor, Mich. and holds a Masters of Science in Clinical Research Administration from Eastern Michigan University.

She will be working with Hope for HIE’s burgeoning research partnerships and bringing much-needed assistance in this part of the organization, as Hope for HIE continues to accelerate research across the many ways it impacts children and families.

Stephanie Sikorski

Program Coordinator

Stephanie has extensive expertise in supporting programs and administration across a variety of settings, as well as having a background as an early childhood educator.


She will be involved with our support and research programs to bring administrative consistency and excellence to various workgroups, projects, and tasks including organizing Hope for HIE’s Medical Advisory Board and HIE Registry project, working with Hope for HIE’s leadership team and program managers.


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LONG TERM FOLLOW UP FOR HIE PARENT & PROVIDER SURVEYS


Currently, there are no published long-term follow up guidelines for neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy. This creates many barriers for families, worldwide.


We encourage our HIE FAMILIES and MULTIDISCIPLANARY PROVIDERS on our listserv to learn more below about this study, consider participating, and sharing across your networks:

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HIE HOSPITAL AMBASSADOR PROGRAM

Launches with Seattle Children's Hospital

Our new HIE Hospital Ambassador Program offers families access to an experienced HIE community member who is deeply familiar with the participating hospital and its services, as well as the local community.


Ambassadors are "the bridge” between their local hospitals and connect families to Hope for HIE’s longitudinal support resources tailored to each family’s unique needs.


Tina Santos, our first HIE Hospital Ambassador, is working with Seattle Children's Hospital. We hope to expand with five additional sites identified in Fall 2024 and launch in 2025.


Two in-person meet ups are scheduled for Seattle-area families.

REGISTER
 
 
 

SUPPORTING HIE FAMILIES THROUGH DISASTER

Recently, many areas in the United States have experienced significant natural disasters displacing and impacting families.


Child Life Specialist, Annie Gunning, CCLS, GC-C, had the opportunity to volunteer in the greater Asheville, North Carolina area this week to provide support to families and brought back a list of resources that may be helpful to help children process living through a natural disaster.


In addition, our team is here to help support our impacted HIE families through connection to local, regional, national, mutual, peer and emergency aid.

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Take Three: Awareness, Education, Support

October is Learning Disabilities Awareness Month. Many learning disabilities don't show up until "school age", which makes it challenging for families to anticipate potential impacts from HIE, and often their children fall in the cracks between the medical and educational systems. Learn more about the connection & advocacy.

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Genetic research has advanced over the last decade, and the more we learn, the more we can look at how genetics may play a factor in HIE -- in utero, at birth, and in childhood.


Join us on October 28 for a Q&A with Maternal Fetal Medicine and Child Neurology to explore this evolving topic!

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Hope for HIE’s Peer Mentorship Program is a cornerstone of our commitment to fostering connection and support. Under the guidance of Haley Thomas, LMSW, our program offers 1:1 and on-call peer support through a remarkable team of 18 trained and experienced mentors. We are excited to introduce new members of the mentor team!

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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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