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National Ability Center Event today, May 14th: RUN’s Undiagnosed Day Without Doctors
Time for some Rare FUN today! This is an intimate event for our Rare and Undiagnosed families to share their diagnostic odyssey and to network about doctors, treatments...
“Racing for RUN” by Matthew Webster
“Racing for RUN” by Mathew Webster Maverick Modified #97 Driver: Matthew Webster, age 30 Spouse: Ciara Webster, age 27 Children: McKynlee Webster, age 5 I chose to “Race...
Dear Mom, Happy Mother’s Day! by Gina Szajnuk
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...
Szajnuk’s Whole Exome Sequencing (WES) report by the Rare Genomics Institute: Science 2.0
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...
Open Science Prize announces six team finalists in first phase of competition and MyGene2 gets our VOTE!
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)...
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...
The Northern Wasatch Association of Realtors still need applicants for their 2016 Have A Heart Home in Layton UT.
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...
Today marks the 2nd Angelversary of Dustin Roger Potter: “A Journal of his Life’s Short Journey” by Julie Potter
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...
Fox 13 News: “Undiagnosed Day” highlighted in Utah for the first time by Tamara Vaifanua
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...
Rachel Platten’s Birthday wish for Ella on her 4th Birthday today!
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...