Staying Connected Virtually
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A big part of what we do at Hope for HIE is make connections between families of children with HIE. In a pandemic, that is especially hard to do.
We have been working on several ideas that allow our community to gather virtually, and connect. Recently, that included inviting comedian Scott Long to do a show that we invited our families to watch. The event was fun, and gave families a break from their daily norm.
Next up, we are planning to showcase our families' talents with performances of "Here Comes the Sun." The virtual community performance is the first of several we would like to do!
We are asking families to send their performances by
June 30
! And we plan to assemple a Watch Party premiere of the final product!
How to participate:
- Participate with how you, your family, friends, etc. communicate (voice, AAC, movement, sign language, etc.), instruments you play, etc., and contribute to our FlipGrid to help us put together a community performance!
- Record a video of your performance of Here Comes the Sun and share to https://flipgrid.com/dcdc02a0. Password is hopeforhie!
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Get yourself a Cup of Hope!
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Hope for HIE recently partnered with Happy Cup Coffee Company to create Cup of Hope, a special coffee blend.
The reviews are in, and this coffee is good.
The proceeds from sales of the coffee go to benefit Hope for HIE, so you can support a cause you love while buying an essential staple -- coffee.
Happy Cup Coffee Company
is based in Portland, Oregon, and offers employment opportunities at a competitive wage to adults with disabilities. Employees have a hand in every aspect of the business, including bagging, labeling, weighing coffee, and developing the creative blend names.
"With every bag of coffee you buy, you commit to reversing the inequities those with disabilities face in the world of employment."
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Social media has been a huge way our families have connected, including our Facebook groups. Recently, our Hope for HIE Foundation Facebook page reached 10,000 followers.
This is a huge milestone for our organization, but we know there is more work to do. Please be sure to
follow us on Facebook, and help us spread the word so no family faces HIE alone.
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What Hope for HIE means to me
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HIE mom Lindsey shared her story with finding Hope for HIE:
"When we first brought Hudson home from the NICU, I remember feeling so lost. Like no matter who I talked to, they didn’t understand. My friends tried and my family saw firsthand what we were going through, but I couldn’t help but feel alone in this journey. So of course, I turned to google and researched as much as I could on Hudson’s diagnosis. The doctors were always so surprised when they saw how positive we were, I couldn’t help but wonder am I delusional? Should I not have this hope? And then, three words popped up on my phone... HOPE FOR HIE. A whole community of families LIKE US. Walking through similar, yet different paths. We are all connected by these three letters and by the HOPE that we share. That we keep fighting for our children, no matter what comes our way. I’ve had my good and bad days in this journey, I know each of us have...but these “strangers” have become like family. And I honestly don’t know how I would’ve made it through these last few months without them. Social media can steal your joy if you allow it. It can be so negative, but oh can it be so positive too. Look at all these beautiful, strong faces I get to see every time I scroll on Instagram or Facebook. All these faces prove that there is ALWAYS hope. And I don’t know about you...but that’s enough for me."
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We've started building our presence on YouTube. Click below and hit SUBSCRIBE!
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