Search results for ‘Ava’
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Lucy Szajnuk’s Dog Attack: Rare and Life isn’t Fair: Open Letter regarding a NO DOG policy on all Soccer Fields in Park City, UT
My role in life is to advocate for my three children that are currently living in the medical world of the unknown. Our family lives on the sideline...
Thank you to everyone involved last Saturday! RUN Day Without Doctors Hosted by the National Ability Center! We have a ton of pictures to share!
RUN Day Without Doctors hosted by the National Ability Center tomorrow!
We are looking forward to a great time at the National Ability Center (NAC) tomorrow! RUN Day Without Doctors! September 12th: If you are attending, please arrive at 1:30p at...
Register for Aware of Angels Art For Angels-Art Contest & Silent Auction
ARTISTS: your ART is needed! Donate your ART for a cause & promote your work. Purchase original Artwork! Aware of Angels is excited to host our 1st Annual...
Rare and Undiagnosed Network (RUN) Day Without Doctors Hosted by the National Ability Center in Park City!
Dear Families, The National Ability Center has been generous to offer an afternoon of fun for our rare and undiagnosed families here in Utah. The activities will be...
Angela Metzger shares why she nominated RUN for a grant
“Why are you recommending this organization?” Angela Metzger: I have been involved in volunteer opportunities. Our family makes it a bi-yearly priority to do a large donation of...
Lucy Szajnuk Update: No solid answers for infection and fever
Gina Szajnuk: Lucy’s blood and urine cultures came back negative today. We will not have a solid diagnoses for her 31,000 white blood cell count or her fever...
The Szajnuk family: Trying to accept our “normal”
July 13, 2015: Just like everyone else, our summer has gone by too fast. My mission this summer was to travel to see our families. We spent time...
Action ALERT: Urge Congress to Vote YES on 21st Century Cures Act
Take Action Action ALERT: Urge Congress to Vote YES on 21st Century Cures Act Calling all Rare Disease Advocates! Take Action: Link to Site This week the House...
Tute Genomics: No Child Left Undiagnosed
No Child Left Undiagnosed “We envision a world where every child and every patient who requires a diagnosis receives one, in time for it to make a difference.” Reid...