March 2023

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Betsy,


We are excited to share the 2023 HIE Awareness Month theme for April this year is "Connected by HOPE", which we are eager to showcase the many ways our community connects, and the work we do to move forward our mission.


I always joke that HIE Awareness Month is actually at least three. There's a lot of preparation that goes into it, then we have the actual month, and the post-awareness strings to tie up and follow up on new opportunities and connections that happen.


I'm so grateful to have Rachel Ramnarine, our communication intern, on board this year to help behind the scenes engaging our awareness month ambassadors and scheduling out all of our educational social media content and stories.


We are also knee-deep in preparing for our Hustle for Hope 5K, with now SIX confirmed in-person events being hosted by members of our community! Deanna Bryan, our program manager, has been coordinating the many logistics behind the scenes to make these events possible and successful. Make sure you take advantage of the early bird pricing that ends March 15th.


I'm also excited to connect with local HIE families and friends from all over once again over the next few months between conferences, in-person meet ups, our mom retreat in FL, and co-hosting a local Hustle event in Michigan!


I am filled with gratitude for the many ways people give back to our organization and encourage you to join in, too!


Most sincerely,


Betsy Pilon

Executive Director

 

HIE Awareness Month: Connected by HOPE

We're getting everything ready for April's global #HIEawarenessmonth!


Our comprehensive toolkit is now available on HIEawarenessmonth.com:


  • Ways to get involved
  • Social media posts and graphics (some coming soon!
  • Calendar of events (regularly updated)
  • Links for swag, colouring pages, Hustle for Hope 5K events, HIE Remembrance Day and more.
Learn More
 
Swag Shop

Hustle for Hope 5K Update

EARLY BIRD REGISTRATION NOW THROUGH MARCH 15!



Don't miss out on saving a few dollars and register before prices go up on March 16th.


Be sure to check out all of the in-person events we are hosting, or register for the virtual option!

Register Now
Find a Local Event
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All video support groups are led by Hope for HIE's licensed social worker through Zoom, and require a registration that can be found on our full calendar of events.


In addition to our support events, we host monthly educational Q&A's with our Medical Advisory Board members and other top clinicians and researchers on the hottest topics to families.


This month, Betsy Pilon, Executive Director, will be speaking at the Duke Margolis Center for Health Policy in Washington, DC elevating the lived experiences of the HIE community in clinical trials, and hosting an area meet and greet happy hour for area parents.

Full Calendar of Events


Upcoming Events


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


The Cerebral Palsy Diagnostic Journey with Dr. Ed Hurvitz

March 10 at 10 am EST

Watch Here


Washington DC HIE Parent Happy Hour

March 22 from 5-7 pm

Elephant & Castle

Register Here


Duke Margolis Health Policy Center: Measuring Clinical Benefit in Neonatal Randomized Trials

March 23: 9 am - 4:30 pm

Register Here




Organizational HIElights

COOL PRIME Patient & Family Advisory Council Kicks Off


Members from the Hope for HIE community met for the first time as a part of the PCORI-funded COOL PRIME clinical trial exploring therapeutic hypothermia for babies diagnosed with Mild HIE.


We are excited to be one of the organizers of the council, and know how much this trial means to our entire global community to attempt to answer the question if cooling improves outcomes for children diagnosed with Mild HIE.


The trial is under the leadership of Dr. Lina Chalak & Dr. Natalie Maitre, both members of Hope for HIE's Medical Advisory Board.

Learn More

Families give insight to develop Child Life services for greater HIE community


We are thrilled to be collaborating with Child Life On Call, an app providing families access to Child Life services and information to best support children and families through medicalized life.


Several members of our support community participated in focus groups this last month giving insight into what types of information would be most helpful.


We are excited to share more in April!

Learn More

Registration Closes April 1 for Mom Retreat in Florida


We still have some spots available for our biennial MomCon(ference) Retreat May 4-7, 2023 in St. Pete Beach, FL.


Registration is $100, plus the cost of hotel and travel. It includes connection sessions, some meals and an atmosphere to connect!


Moms across ALL outcomes are welcome to attend.

Register Now
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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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