Recent Posts
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PET CT Scan denied. Insurance company oncologist admits it is WRONG
I feel like I have just crashed into a wall Concerning the Pet CT scans for Gina, the doctor sent me an email saying “Unfortunately, the pet scan...
Deseret News covers our Rare Children on the Court with the Utah Jazz!
Children with rare diseases get a unique opportunity to stand with players before game By Amy Donaldson, Deseret News Published: Tuesday, Feb. 24 2015 11:20 a.m. MST Updated:...
The gift of the Utah Jazz to our Utah Rare Families
This past Monday night was a dream come true for me. Justin and I wanted to give the gift of the Utah Jazz to our Utah Rare families....
Children’s genetic disorder baffles doctors
Link to video: Children’s genetic disorder baffles doctors Written by Heather Simonsen PARK CITY — A Park City mother and father are fighting for their children’s lives. Their...
Jazz to Host 30 Rare Children at Tonight’s Game (2/23/2015)
RUN wanted to give the gift of the Jazz in support of the Utah Rare events later this week! Thanks to the Jazz player donation program, we were...
Connecting with other rare families for Utah Rare!
The rare community is amazing! I have had the honor of working on the Executive Committee for Utah Rare. Check out UtahRare.org 🙂 The group of people putting...
Hands. They are really important when raising three young children.
Today. I really feel the pain in my hands. I put off going to the grocery store for a few days. I was dreading the errand. I usually...
Rare Disease Day in Utah is February 28, 2015!
Megan, Katie and Lucy celebrate! It’s official! February 28th, 2015 is Rare Disease Day in Utah!
Hard drive arrived today!
The hard drive arrived today from our whole exome sequencing! I have waited over a year for this moment! Thank you to my team in Wisconsin!! You are...
Carcinoid is still an option but insurance company is denying requested tests?!?!
This was the email I opened this morning from one of my specialists: “Thank you for the updates — how are you doing today? I do not think...