Posts tagged ‘Ava Szajnuk’
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#RUN2U Event on April 27th: University of Utah School of Medicine’s Pediatric Medicine Interest Group
Flyer donated by Erica Braymen, Ecosyse Do you know what it is like to live with an undiagnosed rare disease? Please join the University of Utah School...
RUN’s 2018 Rare Disease Day!
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...
Szajnuk Update: Ava Szajnuk and our Undiagnosed Rare Disease
Ava Szajnuk’s CT on November 16, 2017: Technology is beautiful. Ava recently fell and hit her head in gym class. She suffered a head injury and a...
Still Living in the Unknown: Happy 10th Birthday Ava Szajnuk!
We are celebrating Ava’s tenth birthday today! I remember the feeling I had the second I found out I was pregnant with Ava. I waited for years to...
Bio: Ava Szajnuk (Zanik)
Ava Szajnuk (Zanik) is a 16-year-old sophomore at Skyline High School in Salt Lake City, Utah. She was born a healthy child and hit all of her milestones...
RUN’s Journey
My name is Gina Szajnuk and I am the mother of three children with an undiagnosed genetic dysfunction. I am also undiagnosed. We live in a diagnostic odyssey...
MyGene2 and RUN partnership. Please vote today!
Please take the time to vote for MyGene2 in the Open Science Prize!! Your vote matters! They are breaking down the silos! They are RUN’s dream! They will publicly share...
Praying for a Christmas Miracle – a diagnosis, treatment & cure: Undiagnosed Diseases Network visit next week
This is a special time of year for holiday fun. This is a time for making gingerbread houses with your classmates and attending your children’s holiday concerts. Unfortunately,...
Gina Szajnuk: “Today is one of those days I will never forget”
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...
Unexpected Mother’s Day Gifts: Szajnuk’s WGS Results, Acceptance into the UDN x 4 and more…
Update on our Szajnuk’s Diagnostic Odyssey x 4: This week was a very memorable week for our family. Our first meeting regarding the results from our Whole Genome Sequencing (WGS) was...