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Dear Mom, Happy Mother’s Day! by Gina Szajnuk

May 13, 2016 5:27 pm

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May, 2016 Dear Mom, Happy Mother’s Day! Thank you for teaching me the Golden Rule, “One should treat others as one would like others to treat oneself.” Thank...

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Szajnuk’s Whole Exome Sequencing (WES) report by the Rare Genomics Institute: Science 2.0

May 11, 2016 10:09 pm

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At Rare Genomics, we are focused on breakthrough discoveries that save lives. Science 2.0 is an innovative approach to conquering rare diseases that puts patients at the center of...

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Open Science Prize announces six team finalists in first phase of competition and MyGene2 gets our VOTE!

May 9, 2016 11:50 pm

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  MyGene2  is a free, public, searchable site developed for families with rare genetic conditions to share health information (e.g., clinical findings) and genetic data (e.g., candidate genes, DNA sequence data)...

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Unexpected Mother’s Day Gifts: Szajnuk’s WGS Results, Acceptance into the UDN x 4 and more…

May 8, 2016 8:03 pm

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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...

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The Northern Wasatch Association of Realtors still need applicants for their 2016 Have A Heart Home in Layton UT.

May 7, 2016 8:39 pm

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 The Northern Wasatch Association of Realtors still need applicants for our 2016 Have A Heart Home in Layton UT.  Our webpage has the application and qualifications listed.  The...

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Today marks the 2nd Angelversary of Dustin Roger Potter: “A Journal of his Life’s Short Journey” by Julie Potter

May 5, 2016 5:33 pm

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Dustin Roger Potter : “A Journal of his Life’s Short Journey” by Julie Potter My 9th Grandchild and 4th Grandson, Dustin Roger Potter, was Born August 1, 2013 by C-section...

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Fox 13 News: “Undiagnosed Day” highlighted in Utah for the first time by Tamara Vaifanua

May 1, 2016 4:20 pm

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POSTED 7:40 PM, APRIL 29, 2016, BY TAMARA VAIFANUA SALT LAKE CITY – Gov. Gary Herbert declared April 29 Undiagnosed Day. For dozens of Utah families, it’s a...

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Rachel Platten’s Birthday wish for Ella on her 4th Birthday today!

April 30, 2016 2:39 pm

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RUN would like to introduce John Neal and Team Krabbe Strong. John made this video for #TeamElla for her 4th birthday today. Since Ella is such a huge...

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Undiagnosed Day is today! April 29th, 2016 #UndiagnosedDay

April 29, 2016 10:16 am

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What does “Undiagnosed” mean? “An undiagnosed disease is a medical condition without a known cause despite a lot of evaluation.” Undiagnosed Disease Network UDN What is Undiagnosed Day?...

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We are not defined by “VACTERL Assoc., Gastroparesis, Chronic Lung Disease” by Amy Sue Peedle

April 29, 2016 3:54 am

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Even though Aliyah is very sick. We are strong together. Aliyah is a fighter. I am a fighter. She will persevere. I will persevere. We are so very blessed. We...

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