January 2025

A NEW YEAR -- OFF TO A GREAT START!

January feels like a racehorse was just let out of its gate! We started the year by onboarding our new social worker, Jen, had our first co-authored article of the year published -- new guidelines to improve the identification and care of babies facing neonatal seizures (HIE is the leading cause!), and a presentation to the Kansas State School or the Blind about HIE and Cortical/Cerebral Vision Impairment.

We are also excited to share more about an upcoming partnership with Professor Robert Mortier at Drexel University, as Hope for HIE was selected as this Spring Term's Funding for Impact course nonprofit partner!

The start of the partnership began like many things that have moved our mission forward -- a bit of luck and a lot of HOPE -- I have always dubbed these "Hope Winks".

Lastly, I wanted to bring extra attention to our partnership with Child Life On Call and how our community has FREE access to their SupportSpot app, and Child Life services, including free consults, with our Child Life Specialist, Annie Gunning.

I was pleasantly surprised to walk downstairs over the holiday break and find my husband scrolling through the app, learning the best strategies to teach our 12 year old (and 9 year old!) how to swallow pills. Not only was there a step-by-step guide in the app, but Annie also offered her support for Max (and us!) if we needed it. I'm pleased to say within three days, we had success!

If for some reason you don't have access to the app, you have access to all the resources and can request them through Annie.

We are excited for what is ahead this year -- and as always, thank you for your continuious support and encouragement!

Most sincerely,

Betsy

Betsy Pilon

Executive Director

Support Hope for HIE

STAFF UPDATE

We are so excited to share that Jennifer Schaefer, CAPSW, has joined our team! She is an experienced social worker of 17+ years, spending the last 7 years in the Children's Wisconsin Level IV NICU.

In addition, we are thrilled to share Allison Moise has accepted an expanded role with us as the Peer Support Coordinator, working with Jen on the Peer Support Mentor program, and continues her work supporting families enrolled in clinical trials.

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UPDATED GUIDELINES FOR NEONATAL SEIZURES

Hope for HIE was asked to contribute to the new clinical guidelines for continuous EEG monitoring for newborns at risk for neonatal seizures.

The importance of collaborating with patient-families in research and clinical care has been greatly emphasized over the last few years, and we are so grateful to be able to work with so many researchers, physicians and professionals who see the importance and value lived experience brings.

PARTNERING FOR IMPACT

We are excited to announce that we are partnering with Robert Mortier, professor at Drexel University, and have been chosen as the nonprofit partner for his Funding for Impact class in Spring 2025.

Hope for HIE will be the second nonprofit partner in this new program and class, with the inaugural partner, Patagonia's 1% for the Planet.

We look forward to working with Professor Mortier and his students to develop goals and strategies to help Hope for HIE grow in activating more philanthropic giving to help us accelerate and sustain our mission.

To stay updated on this program, be sure to follow us on LinkedIn!

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Take Three: Awareness, Education, Support

Becky Detpef, long time board member, completed her final term on the Board of Directors.

During Becky's tenure, she brought significant advancement and impact to the development of comprehensive support programs and services for Hope for HIE's loss families.

She will remain active as a loss support moderator, and we are so grateful for all of her contributions over the years!

LEARN MORE

One of the more common questions of newly diagnosed families is understanding the beginning of their HIE journey.

With so many tests, confusing and new terminology to learn, and the trauma that HIE and a NICU stay can bring, we want to build health literacy to empower families to ask questions and learn more from their medical team. Understanding why blood gasses are taken at birth, and what they mean is important to families.

LEARN MORE

All HIE families globally have FREE access to our comprehensive support programs and services -- including Child Life services and access to the Support Spot app resources!

Families can sign up for 1:1 consults with Annie Gunning, CCLS, GC-C on an array of topics from developing coping plans for sometimes difficult outpatient appointments, to planned and unplanned hospital stays, family support and SuperSib needs.

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CONTACT US

Outreach@hopeforhie.org

PO Box 250472

West Bloomfield Township

Michigan 48325

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