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Update on Harlie Valdez today…

March 23, 2015 9:06 pm

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I was just sitting down to call Stephanie today to find out how Harlie was doing.  Thank you for all of your comments on RUN as well as...

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We are now able to file the 501(c)(3) application! Brian, thank you for your gift to our organization!

March 18, 2015 6:43 pm

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Dear RUN families, Due to the generosity of Brian Villers, Justin’s childhood friend, we were able to afford the $850 application fee to file the 501(c)(3) this past...

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Insurance company approves WES analysis for Oskar. Lucy Denied. Gina Denied.

March 16, 2015 11:53 pm

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Our insurance company just approved the WES (whole exome sequencing) analysis for Oskar. Great news! Thank you!!! However, they DENIED the WES analysis for both Lucy and Gina....

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National Ability Center: From the Desk of the Executive Director, Ms. Gail Loveland

March 16, 2015 10:38 pm

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What an honor to be in their newsletter. We truly feel blessed to have found the National Ability Center and all of the wonderful people there. We look...

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Harlie Valdez is not doing well. Please pray.

March 14, 2015 7:19 pm

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I have been blessed to meet the most amazing rare children as well as their strong mothers and fathers. No one can truly understand what they go through...

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The loss of Christina “Tina” Tournant

March 14, 2015 5:18 pm

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I read the post from the Dysautonomia Advocacy Foundation on Facebook earlier this week. It stopped my heart for a second. Christina “Tina” Tournant took her own life due...

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A diagnosis is not coming any time soon for the Szajnuks. Not for Ava, Oskar and Lucy. Not for me.

March 10, 2015 5:38 pm

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I met with my specialists for yet another round of appointments over the past week. There are still no answers for me. I had a few more diagnostic...

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Please Register and Vote! Wearable Devices, Precision Medicine and Temperature Regulation

March 6, 2015 10:55 pm

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PLEASE REGISTER AND VOTE! THIS COULD HELP OUR FAMILY!! http://markhoffmankc.com/wearable-devices-precision-medicine-and-temperature-regulation/ Wearable Devices, Precision Medicine and Temperature Regulation This entry was posted in #Research#ResearchImprovesLives#ResearchSavesLives on March 6, 2015 by Mark...

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Utah Rare’s 2015 Rare Disease Day Symposium. Rare families. The heartbreaking stories from yesterday…

March 2, 2015 12:00 am

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I felt honored to be a part of the Utah Rare’s 2015 Rare Disease Day Symposium. It will be a day that I will never forget. Not only...

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Utah’s Rare Disease Inaugural Symposium: Speech by Gina and Justin

February 28, 2015 7:15 pm

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LIVING IN A DIAGNOSTIC ODYSSEY, TIMES FOUR Good afternoon. My name is Gina Szajnuk and this is my husband Justin Zanik. We have three undiagnosed children. Ava, is...

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