The race for answers is a marathon, not a sprint

By Debra Curran

Contributing writer

Waiting. Watching. Hoping. Waiting some more. Watching. Waiting. Hoping.

That’s what this HIE journey is all about. And it’s what makes it so damn hard.

One day, you’re minding your own business enjoying your life with your head in the clouds, and the next minute your world, your hopes and your dreams are shattered by your child’s hypoxic ischemic encephalopathy brain injury.

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An assistive technology geek’s dream

By Jill Uswajesdakul

A kid in a candy store. That’s the best way to describe the feeling I got walking into the vendor hall at the Assistive Technology Industry Association’s (ATIA) annual conference this January.

Stepping into this huge convention center filled with every possible piece of assistive tech hardware and/or software programs. Being surrounded by leaders in fields of AT and special education, such as Linda Burkhart, Gretchen Hanser, Caroline Musselwhite and Karen Erickson, to name just a few. Getting to choose from HUNDREDS of presentations.

In short, an assistive technology geek’s dream.

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Meet our giveaway winners

For the fourth year in a row, Hope for HIE held 10 Days of Giveaways, where families can enter drawings for giveaways ranging from equipment to gift cards.

Through these giveaways, we hope to make life a little easier for our families affected by HIE. This year, we were able to give 44 families a little extra HOPE for the holidays!

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Research Updates on Mild HIE

With over 5,000 families calling Hope for HIE home around the world, across all outcomes, our support network and information sharing is the largest collection of parent and family voices with neonatal and pediatric acquired hypoxic ischemic encephalopathy. While there is a lot of research that focuses on moderate and severe HIE, outcome tracking data continues to be lacking and our community actually is an incredible repository for tracking outcomes. With mild HIE, many families have come across the "brush off" for long term outcomes.

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Hustle for Hope 5K

The Hustle for Hope 5K is one of many activities taking place throughout the month of April, HIE Awareness Month, to increase awareness, education, and support of Hypoxic Ischemic Encephalopathy through Hope for HIE, the premiere organization dedicated to awareness, education and support. 

Hope for HIE chose the virtual format to meet the needs of its global community, allowing for flexibility, diversity and inclusion. Participants pick a date, time and location (indoors or outdoors) that works best and can complete the 5K by any form of mobility (walk, run or roll).  

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