Category: Holoprosencephaly Awareness Week


Words

By: Kelli Aardal Goin Words she never got to say, However communicated in a big way. Let you know when something was wrong, Loved to listen to her favorite song. Her twin sister was her very best friend, The one…

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A Wish With Wings

By: Kelli Aardal Goin The news that no parent wants to hear, Their child has a terminal illness and isn’t guaranteed a year. The hospital visits become a common affair, Their child’s story they are often asked to share. Stress…

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Where we are

By Nikki Tuma Here is a little story about Kreighton that got us to where we are today : Kreighton was born July 25, 2013.. when we found out we were pregnant with him, there were no abnormalities that arose…

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Walk Around The World

As HPE families, what can we do to share our HoPE and holoprosencephaly with the world?

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What HoPE means to us

What is it really…this HOPE? And why is it so important? Hope is something we can feel, but hope is also an intentional choice. Definition; hope  /hōp/ a feeling of expectation and desire for a certain thing to happen.”he looked through…

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HPE Awareness Week

Holo. . . what?

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Coloring

Coloring is a hot trend for adults, and gathering a group of individuals together to color is a unique way to raise awareness of HPE!  If you are interested in using coloring as a way to raise awareness of HPE…

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A lasting memorial

As we approach Holoprosencephaly Awareness Week on March 27-April 2, we wanted to find a special and lasting way to memorialize all of our precious children who have passed away with HPE. As you may know, at each of our…

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Opportunity strikes

National Holoprosencephaly Awareness Week March 27th – April 2nd.   We are often approached by HPE families seeking ideas for raising awareness for HPE in their local communities. One of the hottest trends right now is coloring books for adults. Haven’t…

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HPE Awareness Week 2015 – Social Media Tools

Please feel free to download and share these items on social media to help raise awareness of HPE during Holoprosencephaly Awareness Week 2015, March 23-29.  

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HoPE is on YouTube

This playlist features children with HPE.  Sit back, relax, and prepare to smile as you see these beautiful miracles–Eva, Madelyn, Sammy, Marissa, Maeve, Cameron.  Do you have a video you’d like to share with us, please comment below and include…

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HPE Families, Start Your Engines!

The 1st Annual Holoprosencephaly Awareness Week kicks off tomorrow!  We want to hear what you and your family and friends are doing to help raise awareness and educate others about this condition that has made such an impact on our…

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Celebrate HPE Awareness Week

LINKS: Miche Scentsy Thirty-One Blessings Unlimited Pampered Chef Premiere Designs

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Celebrate HPE Awareness Week

LINKS: Miche Scentsy Thirty-One Blessings Unlimited Pampered Chef Premiere Designs

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