Hope for HIE's Statement on COVID-19

We know now is a difficult time for all as we try to navigate through the COVID-19 pandemic. As we serve a global community, we want to share some insight, guidance, and reassurance to our families.

We have heard from many of you that you are anxious, nervous and scared. We know you have questions about how to get through this time. That is why we have reached out to some of the most knowledgeable clinicians in the world, who also happen to serve on our Medical Advisory Board, to ask your questions.

First and foremost, listen to your local authorities regarding social distancing measures and other important guidelines. Many in our community already do this for their at-risk children, and it is important now more than ever to heed this advice.

 

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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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