Search results for ‘Harlie ’

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Much better than a hospital room!

June 1, 2015 10:34 pm

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Harlie Valdez and Ava Szajnuk enjoy a night out together: This past Saturday night was a great night at The National Ability Center’s Barn Party. For Harlie, it...

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Stephanie Valdez: Updates us on Mother’s Day

May 10, 2015 4:30 pm

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Help For Harlie added 3 new photos — feeling blessed at Primary Children’s Hospital. First of all I would like to wish all those beautiful amazing women out...

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Gabe Valdez: “RUN HARD, RUN FAST, JUST RUN”

April 19, 2015 5:57 pm

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GABE SHARES THIS SUNDAY MORNING… Today is the 231st day of our journey. It begins at 3:00a. My baby calls for me because she has to go to...

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Strangers coming together to make change and become a rare and undiagnosed family.

April 4, 2015 8:54 pm

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I have been blown away by the generosity of strangers over the past few years. The power of love from friends and family helps more than you will...

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The gift of the Utah Jazz to our Utah Rare Families

February 24, 2015 9:25 pm

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This past Monday night was a dream come true for me. Justin and I wanted to give the gift of the Utah Jazz to our Utah Rare families....

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Jazz to Host 30 Rare Children at Tonight’s Game (2/23/2015)

February 23, 2015 4:29 pm

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RUN wanted to give the gift of the Jazz in support of the Utah Rare events later this week! Thanks to the Jazz player donation program, we were...

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Advisory Board

August 22, 2014 10:10 pm

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The RUN Advisory Board Mission & Vision  Raise awareness for families with children afflicted with undiagnosed or rare diagnosed conditions. Urge insurance companies to reimburse genome sequencing in...

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