December 2023

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Seasons of Hope


I began the month presenting at the American Epilepsy Society conference in deep reflection to our first time attending in 2019 -- a time where we were quite literally meeting on the side of the road with accomplished advocates like the Honorable Tony Coelho, one of the framers of the ADA.


Fast forward four years later and we're wrapping up an absolutely exceptional year of growth for our organization and global cause.


We've presented at the request of the FDA and Gates Foundation this year, launched two landmark clinical trials, hosted countless in-person and online events, sent out over 1,000 newly diagnosed support packages, began the huge undertaking of a HIE registry, and created accessible educational resources in first languages to build health literacy.


We look forward to sharing our full 2023 Impact Report with you in the New Year.


As we close out December, a time for reflection and gratitude, we're reminded of the incredible community that surrounds us.


We cannot do this work without your support - thank you from the very bottom of our hearts from all of us at Hope for HIE for your continued commitment to our community and cause.


To our steadfast Partners in Hope Medtronic, ReAlta Life Sciences and Neotech Products -- your commitment to our community ensures sustainability of our comprehensive programs and services connecting over 9,000 families worldwide.


Lastly, thank you to Teleflex who awarded us a $5,000 Make a Difference grant - a wonderful surprise in the PO Box this week!

Together, we're changing the world for countless families with genuine HOPE.

Betsy


Betsy Pilon

Executive Director

Support Hope for HIE

Newly Diagnosed Family Support Group

1st Thursday of every month at 8 pm EST

Register Here


Loss Family Support Group

2nd Thursday of every month at 8 pm EST

Register Here


Navigating Infantile Spasms: HIE Peer Perspective Series

January 5 @ 12:00 pm EST

Register Here


Navigating Sleep Disturbance & Disorders: HIE Peer Perspective Series

January 16 @ 11:00 am EST

Register Here


Navigating School Stress as an HIE Parent

January 19 @ 12:00 pm EST

Register Here


HIE Support: BIPOC Families

January 22 @ 8:00 pm EST

Register Here

 
 

GET HUSTLIN'!

HOST A LOCAL HUSTLE FOR HOPE 5K


Join us in hosting the Hustle for Hope 5K and help spread hope and awareness to families affected by HIE. Whether you're a seasoned event organizer or a first-time host, we'll provide you with all the support and resources you need to make this year's 5K a resounding success. Take the first step and sign up today – together, we can make a difference!

Hustle Host FAQ & Sign Up
 

BREAKING GROUND IN HIE & EPILEPSY RESEARCH


Discover the latest advancements and critical insights in HIE and epilepsy research in our key takeaways from our latest Q&A with Dr. Adam Numis -- pediatric neurologist, epilepsy specialist, researcher, and Hope for HIE Medical Advisory Board Member.

Key Takeaways
 
 

EMPOWERING PARENTS WITH CHILD LIFE STRATEGIES TO HELP THEIR KIDS COPE WITH STRESS


Read our Child Life Q&A key takeaways with Annie Gunning, CCLS, to uncover valuable insights for helping your children cope with stress and practical tips for nurturing your child's emotional well-being.

Key Takeaways
 

'TIS THE SEASON: GIVE HOPE


In this season of giving, we want to shine a light on our incredible volunteers who are true inspirations to our community. We invite you to follow in their footsteps and celebrate the spirit of giving. Your generous contributions, whether through donations, volunteering, or sharing your own experiences, play a crucial role in bringing hope and brighter futures to those navigating HIE challenges.


Give Hope
 
 
 
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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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