Recent Posts
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RUN Event at Primary Children’s Outpatient Center on January 31st!
Gina (me) will be in Salt Lake City for a few days to watch the Milwaukee Bucks play the Utah Jazz next week! I could not pass up the opportunity...
“The love of my life…Becky Lockhart and Cruxfeldt-Jacob Disease” by Stan Lockhart
16 years before she died, Becky had a miscarriage at 10 weeks. The pregnancy was unexpected, but we were excited to have child number four in our home....
“Congenital Generalized Lipodystrophy (AGPAT2) and Alani” by Rachel Daniels
Born in January 2014 was my sweet Alani. Just over 5 lbs, she was so small and frail but so beautiful. She had an awfully large belly to...
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...
Updated Rare Disease Facts and Figures from NORD
Updated Rare Disease Facts and Figures from the National Organization for Rare Disorders (NORD) Below are the updated facts NORD will be using in 2017. The following facts have vetted...
The Mighty: “To the Person Who Left Me a Rude Note After I Parked in a Handicapped Spot” by Gina Szajnuk
This story originally appeared on The Mighty To the Person Who Left Me a Rude Note After I Parked in a Handicapped Spot You left a rude note...
Happy New Year to my RUN family
Happy New Year’s Day to all of our family and friends. I went back through our 2016 pictures and landed on this picture this morning. As we are...
The Szajnuks and the Undiagnosed Diseases Network (UDN)
Today is the one year mark for us with the Undiagnosed Diseases Network (UDN). Our applications landed on their desk last December, 21st, 2015. We are so very...