Recent Posts
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Diagnostic Odyssey. I am living in one. And, it is scary.
Diagnostic odyssey. It is exhausting. It is expensive. It is scary. I have dealt with living in the world of the unknown for the last four years with...
Bertrand’s 7th Birthday with the Jazz
December 9th was a wonderful day for our family as well as the Might family. We celebrated Bertrand’s 7th birthday together at the Utah Jazz home game against...
Waiting for Whole Exome Sequencing Results
We are currently waiting for the whole exome sequencing results in a clinical setting from the Rare and Undiagnosed Program at the Children’s Hospital of Wisconsin. Dr. Howard...
RUN is officially a Nonprofit!
We received our Articles of Incorporation (Nonprofit). We are in the process of obtaining our 501(c)(3) status from the Internal Revenue Service. IRS Pub 557 indicates that the...
Award of Merit from Best Shorts Competition for The Szajnuk (Zanik) Family Whole Genome Sequencing Mission
BEST SHORTS COMPETITION The judges wish to recognize the Award of Merit winners for notable artistic or technical aspects of their project in the categories entered. Gina Szajnuk...
Insurance approval for “quint analysis” whole exome sequencing (not whole genome sequencing)
We finally realized that there was no way to get the whole genome sequencing approved at this time for our family with the way our policy was written...
Megan Nuffer and her sister’s story, Katie…
Gina, My name is Megan Nuffer, I am the one that sat behind you at the concert, Melissa and I. I am so happy you gave me your...
Insurance company approves exome sequencing only for Ava. Denied Oskar and Lucy.
Our insurance company approved the exome sequencing only for Ava. This is a wonderful step forward for Ava. However, Oskar and Lucy need it as well. We also...
Denied
“Based upon current available information, coverage cannot be approved because there is insufficient scientific evidence to demonstrate the effectiveness of validity of whole genome sequencing for diagnostic purposes...