March 2024

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WHERE IN THE WORLD IS HOPE?


In February, we hosted our first ever Family Perspective Dinner in Cork, Ireland at the International Newborn Brain Conference with several local families, Medical Advisory Board members, Board of Directors members, Partners in Hope (thank you ReAlta for making this dinner possible!!!) and top researchers and clinicians from all around the world. Our event was AT CAPACITY with a wait list! WOW!


We've been connecting families, worldwide, since 2010, and it's amazing when we can get people together and around the same table where advocacy and support take us. Last year, we connected families in Vancouver, Washington DC, Florida, and Australia.


Have you registered yet to HUSTLE FOR HOPE? We have 15 amazing Hustle hosts bringing together local communities, and have both virtual and scheduled virtual events to participate in. Early bird registration ends this Friday, so be sure to get registered soon to save!


We are excited to head to the Pediatric Academic Society meeting in May, where our Board of Directors will convene, network and drive forward our mission. We look forward to hosting another opportunity for local families in Toronto, Ontario to get together.


AND, it's almost April which is global HIE Awareness Month! This year, our theme is TRANSFORMING HOPE, and wow, if you've been around for the last few years, you've seen the growth -- not just in our own organization, but in the global landscape of HIE advocacy and research.


We are looking forward to sharing more about where we've been, where we are, and where we are going with the state of neonatal and pediatric-acquired HIE in April. Be sure to check out the toolkit at HIEawarenessmonth.com.

Check out more below about opportunities to GET INVOLVED -- whether that's in our support network, or in research, sharing your story and more!

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


Support for HIE Dads

March 18 @ 12:00 pm EST

Register Here


Navigating Dystonia: Peer Perspectives & Support

March 20 @ 1:00 pm EST

Register Here


Navigating Kidney Impacts: Peer Perspectives & Support

March 25 @ 12 pm EST

Register Here


Navigating Grief & Trauma Support Group

March 25 @ 8 pm EST

Register Here

 
 

TRANSFORMING HOPE: HIE Awareness Month 2024

We are so excited to convene global HIE awareness month in April once again! You can check out the website and toolkit for the most up-to-date awareness and educational events... more to come later in the month as we firm up speakers and topics, and you will get to know our HIE awareness month ambassadors!


Don't forget to grab some swag, too!

LEARN MORE
 
 

GET READY FOR THE 2024 HUSTLE FOR HOPE 5K!


Early bird registration ends Friday, March 15, and we have over 450 participants already registered across our 15+ in-person and virtual events!!! Don't miss out!

REGISTER NOW
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KIDNEY AWARENESS MONTH: Exploring HIE & Kidney Impacts



We had the honor to have Dr. Matt Harer, neonatologist, researcher, and board member of the Neonatal Kidney Collaborative to share more about the impacts that can happen on the kidneys from HIE, a call for long term follow up and care, and integration of studying kidney impacts in neonatal research.

WATCH VIDEO
 
 

Take Three: Awareness, Education, Support

March is Cerebral Palsy Awareness Month! CP impacts upwards of 40% of all children diagnosed with HIE and has a wide range of how it can manifest.

Learn More

Help clear up confusion with using terminology in the NICU! HIE is "under the umbrella" of neonatal encephalopathy, and its own distinct diagnosis! Give input through this survey to ensure every family gets a proper diagnosis so they get connected to support!

Take Survey

Did you know we have a specific program just for siblings of children with HIE, including loss siblings? It's FREE, and we are gearing up to connect the sibs at our upcoming Hustle for Hope events, and via Zoom peer groups!

Learn More
 
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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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