Recent Posts

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Update on Harlie Valdez. She is still at Primary Children’s Hospital

February 12, 2015 12:23 am

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I visited Harlie and Stephanie yesterday. I am so very concerned for Harlie. I brought her a few fun things to do to take her mind of off...

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Quint Analysis Results are in. “First step” in a new journey…whole exome sequencing.

February 6, 2015 1:52 am

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Yesterday was an interesting and exhausting day. As you may remember, we were not able to get whole genome sequencing approved through our insurance company for all five...

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Waiting for the meeting to start.

February 6, 2015 12:06 am

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As I sit and wait for our geneticist and our genetic counselor to enter the room, I am sick to my stomach. There are so many thoughts going...

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Whole Exome Sequencing Results Are In!

February 3, 2015 12:52 am

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We just got the call from our genetic team back in Wisconsin.  They want us there ASAP. Justin and I are flying tomorrow. Meeting on Wednesday. Flying back...

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Szajnuk Update. The journey continues. And, I am very scared.

January 31, 2015 7:42 pm

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Dear Family and Friends, I started RUN for my three undiagnosed children. So, I apologize for blogging on it about myself lately. I want to share my journey...

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Harlie Valdez’s story with possible Juvenile Dermamyositis (JDM)

January 31, 2015 7:15 pm

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I met Harlie the night we took Bertrand to the Utah Jazz game. Harlie was there with her family. Her mother, Stephanie, and I exchanged information. My heart...

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My 42nd birthday. A much better birthday than last year.

January 20, 2015 10:19 pm

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Today is my 42nd birthday. It brought me back to where I was last year on my 41st birthday. I had gone to California to be by myself...

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TEDMED Thank you!!

January 20, 2015 9:26 pm

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#TEDMED Frontline Scholar @ginaszajnuk is co-chairing Utah's 2015 Rare Disease Day in February. Follow @utahrare for details! — TEDMED (@TEDMED) January 20, 2015

Utah’s Rare Disease Day Events

January 20, 2015 9:25 pm

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Utah’s 2015 Rare Disease Day is going to be BIG this year, and we’d love for you to be a part of it.  🙂 February 27, 2015 —...

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Katie goes to a JAZZ GAME!!

January 19, 2015 5:39 pm

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January 16th, 2015 was the best night I’ve had in a long time. For the first time since I had my surgery I got to go out with...

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