Search results for ‘Harlie ’
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RUN’s NBA Initiative: NBA Teams Hosted Rare and Undiagnosed Families!
The Utah Jazz honored 30 rare and undiagnosed children and their siblings on the court as National Anthem Buddies on March 17th, 2018! Ricky Rubio and Alec Burks...
#RUNNBA: Meet our Utah Jazz National Anthem Buddies!
In 2015, we started RUN’s NBA Initiative through the generosity of the Utah Jazz and the Larry H. Miller family. We were so excited to continue our initiative...
Debbie, Heather & Logan-Miller Syndrome and…
Debbie Jorde: Multiple Sclerosis (MS) Mother to Heather & Logan Heather Madsen: Miller Syndrome, ADHD, Autism, ciliary dyskinesia (PCD), Hearing Impairment Logan Madsen: Miller Syndrome, ASD, ciliary dyskinesia...
RUN’s Journey
My name is Gina Szajnuk and I am the mother of three children with an undiagnosed genetic dysfunction. I am also undiagnosed. We live in a diagnostic odyssey...
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...
Racing for RUN, National Ability Center’s Barn Party and Ava’s Birthday!
Thank you to Matthew Webster, Ciara Jo Webster and their entire family for their dedication to the Rare & Undiagnosed Network RUN and Utah Rare community. Thank you...
Fox 13 News: Kearns teen battles rare, incurable disease to return to softball diamond by Tamara Vaifanua
Kearns teen battles rare, incurable disease to return to softball diamond POSTED 10:14 PM, MAY 14, 2016, BY FOX 13 NEWS AND TAMARA VAIFANUA “KEARNS, Utah – A...
“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...
Andrew Scholte: RUNning for Rare Zebras
Andrew Scholte: “For the past two years I have been partnered with Emma, a member of the Gaucher community for the Running For Rare Team. This year I...
Faith-based movie “Miracles From Heaven” misses opportunity to raise awareness for the majority of rare disease families
Thank you to the filmmakers for making the movie “Miracles From Heaven” with Jennifer Garner. It is the real-life story of Annabel, who suffered from a rare disease....