Archive for the ‘Oskar Szajnuk’ Category

Watch #RUNNBA: Utah Jazz National Anthem Buddies

May 5, 2018 10:46 am

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RUN’s #RUNNBA: Utah Jazz National Anthem Buddies Watch our #RUNNBA video and experience what it was like to be on the court of the Utah Jazz! In 2015,...

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RUN’s 2018 Rare Disease Day!

February 28, 2018 9:27 pm

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RUN’s 2018 Rare Disease Day events were incredible! Thank you to the Rare Disease Legislative Advocates and the EveryLife Staff for allowing me to share our journey and...

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Wishing you a Safe and Healthy 2018!

December 31, 2017 11:22 pm

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As 2017 comes to an end, we want to wish you all a safe and healthy 2018!  Thank you to all of our RUN families for continuing to...

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UNDIAGNOSED is a DIAGNOSIS: The Szajnuk’s Journey Updated!

March 21, 2017 10:40 am

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UNDIAGNOSED IS A DIAGNOSIS: Living in a Diagnostic Odyssey x 4 By Gina Szajnuk  I have three children that are officially diagnosed as Undiagnosed. They have an Undiagnosed...

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Gina Szajnuk: “Today is one of those days I will never forget”

October 2, 2016 9:31 pm

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Today was a good day. It was a really good day. It is one of those days that I will never forget. Ava, Oskar, Lucy and I stepped...

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Faith-based movie “Miracles From Heaven” misses opportunity to raise awareness for the majority of rare disease families

March 25, 2016 4:09 pm

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Thank you to the filmmakers for making the movie “Miracles From Heaven” with Jennifer Garner. It is the real-life story of Annabel, who suffered from a rare disease....

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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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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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