Posted: October 30, 2012 by Leslie, Sammy's mom
By Michelle Alexander I can pick a time in my life when I felt as though the world had stopped turning. When time seemed to slow down to the point of hearing my own heart beat, loud and clear as if it were a base drum methodically beating inside of my ear. Then the feeling …
Category: Guest Authors, Inspiration, Perspectives Tags: diagnosis, holoprosencephaly, HoPE, HPE, hydrocephalus, ultrasound
Posted: October 25, 2012 by Leslie, Sammy's mom
We have all been there . . . in a public place with our child . . . and we feel the stares. What do you do? Kellie Moore, mom to 4 year-old JT, from Bowling Green, Kentucky recently created this t-shirt for those “special” occasions. That’s one courageous and creative mom you have, JT! …
Category: Leslie, Perspectives Tags: awareness, disability, educate, HoPE, stare
Posted: September 21, 2012 by Leslie, Sammy's mom
Friends of the heart. via Friends of the heart.
Posted: September 8, 2012 by Leslie, Sammy's mom
One of our new little ones with HPE, Pearl Joy Brown, has been busy helping raise awareness of HPE. Her story was published in the Washington Times newspaper earlier this week. Please take some time to read through the blog about her or follow her dad on Twitter. There is even a special virtual event …
Category: Birthdays, Inspiration, Leslie, Milestones Tags: candles, cupcakes, eric brown, holoprosencephaly, HoPE, HPE, letters to pearl, pearl joy brown, ruth brown, washington times
Posted: July 6, 2012 by Leslie, Sammy's mom
This photo montage was created by Bridget Eckert, in memory of her baby sister Paige. Thank you Bridget for Sharing the HoPE in HoloProsEncephaly!
Category: Grief, Guest Authors, Inspiration, Leslie, Uncategorized Tags: bridget, HoPE, montage, paige, photo, video
Posted: March 28, 2012 by Leslie, Sammy's mom
It seems we have a sports theme going these days! First, congratulations to Laura Phillips for correctly naming the person in the “got HoPE?” contest. Laura is the mom to little Kaziah who has semi-lobar HPE. Laura will be receiving some logo items from Families for HoPE for her winning answer! The person in the photo …
Category: Leslie, Racing for HoPE Tags: holoprosencephaly, HoPE, Hope Zeller, Josh Timmerman, Kyle Gimple, Luke Zeller, racing, radio, Speed Talk
Posted: February 18, 2012 by Leslie, Sammy's mom
As another NASCAR season is beginning, we wanted to share a flashback to a special moment in our HPE family history. (We miss you Cayden!) Good luck to all of our racing favorites, especially those who have been so supportive of our special kiddos with HPE. ************************************************ Through tragedy, crew member works to put Earnhardt …
Category: Grief, Leslie Tags: Budweiser Shootout, Cayden, Daytona 500, Earnhardt, Hendrick, HoPE, Joey Arnold, NASCAR, racing, Shira Arnold, Skylar
Posted: May 25, 2011 by Leslie, Sammy's mom
Maybe you haven’t heard of Nolan…but that’s all about to change! When Janelle Emory learned that her unborn nephew, Nolan, would be born with Holoprosencephaly, she knew that she wanted to do something special in his honor. Inspired by Nolan and his journey of HoPE, Janelle has started a fundraising campaign called “Changing Lives With …
Category: Fundraising, Inspiration, Leslie Tags: change, fundraising, HoPE, Janelle, marathon, Nolan
Posted: February 12, 2011 by Leslie, Sammy's mom
In recognition of the beginning of another NASCAR® racing season and in memory of Cayden Arnold, we share this special story of HoPE from 2008. Through tragedy, crew member works to put Earnhardt in victory lane By Chris Jenkins Associated Press February 12, 2008 DAYTONA BEACH, Fla. — A blind child who could see. A …
Category: Grief, Leslie Tags: Budweiser Shootout, Cayden, Daytona 500, Earnhardt, Hendrick, HoPE, Joey Arnold, NASCAR, racing, Shira Arnold, Skylar
Posted: March 16, 2010 by Leslie, Sammy's mom
Category: HPE Conference Tags: bethesda, Carter Centers, conference, holoprosencephaly, HoPE, HPE, NIH