Recent Posts
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Update on Harlie Valdez today…
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...
We are now able to file the 501(c)(3) application! Brian, thank you for your gift to our organization!
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...
Insurance company approves WES analysis for Oskar. Lucy Denied. Gina Denied.
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....
National Ability Center: From the Desk of the Executive Director, Ms. Gail Loveland
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...
Harlie Valdez is not doing well. Please pray.
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...
The loss of Christina “Tina” Tournant
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...
A diagnosis is not coming any time soon for the Szajnuks. Not for Ava, Oskar and Lucy. Not for me.
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...
Please Register and Vote! Wearable Devices, Precision Medicine and Temperature Regulation
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...
Utah Rare’s 2015 Rare Disease Day Symposium. Rare families. The heartbreaking stories from yesterday…
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...
Utah’s Rare Disease Inaugural Symposium: Speech by Gina and Justin
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...