Recent Posts
Page 19 of 48
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...
Rachel Nielsen: H.O.P.E (hold on, pain ends)
I’ve found that having a chronic illness is much like losing someone very close to you. People will say they understand your pain, they’ll tell stories about how...
MyGene2: Offering whole exome sequencing directly to families. Apply now!
MyGene2 is currently offering $825 for CLIA-certified whole exome sequencing (WES) right now! This is an incredible opportunity for families with a rare or undiagnosed disease! You will...
AllTrials is gathering stories of patients!
AllTrials is a non-profit focused on raising awareness of the tremendous need for higher standards in reporting all results of clinical research trials. Patients’ voices are incredibly important in this movement,...