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“Kind Words” by Doris
Gina I hope you and the family have comfortably settled in and are enjoying the cooler Wisconsin weather. Now that basketball season and school is in full swing,...
Rachel Nielsen: Still Undiagnosed but we received some answers!
Another update! (You guys are probably sick of me by now😅😉🙈) I recently got some results back from a muscle biopsy in Wisconsin and I saw a geneticist...
“Undiagnosed For TWO Years” by Hailey Sampsel
Two years ago, my health journey started and my whole life changed. Instead of my life of competitive tumbling, running track, and being a straight A student. My...
Utah Rare’s Journey
It was an honor to share my journey with Utah Rare at the Global Genes RARE Patient Advocacy Summit along with Sharon King of Taylor’s Tale and the NC Rare Disease Network. The breakout...
Robyn Forsythe shares her updates on her son, Calen
Friday, September 30th: Calen is up and down. He spiked a fever last night and was very uncomfortable but once fever broke he was great through the night....
Prayer for Harlie Valdez as she continues her fight against JDM
Harlie Valdez has been in remission from Juvenile dermatomyositis (JDM). However, new symptoms have been creeping up on Harlie this fall. She is scheduled for a MRI tomorrow at Intermountain...
Kate Nielsen updates on her daughter, Rachel
Sunday, October 3, 2016 Rachel Nielsen and family appreciate all the love and prayers sent our way. This has been a very stressful and tiring week spent at...
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...
Rachel Nielsen and Calen Forsythe: Prayers Needed
We have had a long day of negotiating between the University of Utah Hospital and Intermountain Primary Children’s Hospital for Rachel’s care today. She has two amazing doctors...
Global Genes: RARE Champion of Hope – Advocacy: Gina Szajnuk
“Over 350 individuals and organizations worldwide were nominated by their peers for a RARE Champion of Hope award for their notable efforts in rare disease advocacy, science, collaborative...