Category: General


HoPE Walk ‘N’ Roll

First Annual HoPE Walk ‘N’ Roll festival Families for HoPE, Inc. is a 501(c)(3) nonprofit organization formed to address the needs of families and children diagnosed with holoprosencephaly (HPE) and related brain malformations. Deeply committed to raising awareness of holoprosencephaly,…

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Grandparents View

While I’m preparing to complete the 2020 conference registration for Dorothy and I, we were talking about last years event.  2018 was my second conference.  The first was in 2008 when Chloe was a baby and I learned so much about…

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Exhausted

For the exhausted mom who hides a few minutes to cry in the bathroom… For the mom hidden in the bathroom, because she needs a few minutes of tranquility while slipping tears from her eyes. For the mom who is…

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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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If there was a cure

If there was a cure. I would see you crawl and I would follow you all around to make sure you weren’t getting into trouble. If there was a cure. I would see you unsteadily walk around and grab all…

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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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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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My Amazing life, at least it is to me!

By Heather Rinard The blades of the grass softly whispered their song in my ear, as I laid sprawled out on the checkered cloth, enjoying our teddy bear picnic. Momma made our childhood magical. From tea parties in the garden,…

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Fun on St Patty’s Day

Every March 17, St. Patrick’s Day is celebrated with parades, parties, and a lot of green. This date marks the death of Saint Patrick, the Patron Saint of Ireland. … Today, the holiday has evolved to become a secular celebration of Irish culture. Green garb, leprechauns,…

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The Benefits of Inclusion

Children with Special Needs •affords a sense of belonging • to the diverse human family • provides a diverse stimulating environment in which to grow and learn • evolves in feelings of being a member of a diverse community •…

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Rare Disease Day

What is holoprosencephaly? Holoprosencephaly is an abnormality of brain development in which the brain doesn’t properly divide into the right and left hemispheres. The condition can also affect development of the head and face. In general, the severity of any facial defects…

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Helpful tips with an IEP

An IEP is the individualized education plan, a document written for a child with a disability that identifies needs, sets goals and lists services to insure optimal educational and vocational outcomes. Often the IEP process can be intimidating and overwhelming…

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Person Centered Planning

What is person centered planning? A person centered plan can help those involved with the focus person see the total person, recognize his or her desires and interests, and discover completely new ways of thinking about the future of the…

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The start of Inclusion

Martin Luther King, Jr., Day, in the United States, holiday (third Monday in January) honouring the achievements of Martin Luther King, Jr. A Baptist minister who advocated the use of nonviolent means to end racial segregation, he first came to…

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