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Ava Szajnuk shares her first blog for RUN Kids
Ava Szajnuk: “Hi. My name is Ava. I am eight years old. I am rare and undiagnosed. My family is going through a very tough life because it’s...
Update on Grayson McClure. What can a mother do?!
Update from Kay McClure: “Hi Gina, Long days as you well know. Grayson convulses all day. Up to so much medicine in his port:( His exome sequencing was...
Stephanie Valdez shares today. When it rains, it pours.
Stephanie Valdez: “In these moments, it’s easy to focus on all of the things that have gone wrong. It’s easy to focus on the loss and the heartbreak...
Harlie Valdez is home from the hospital
We are happy to hear that Harlie, Stephanie and Gabe are home tonight. However, the road ahead for Harlie and her entire family is going to be a...
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...
Ava Szajnuk and Harlie Valdez: We all said prayers today.
July 12, 2015: Ava and Harlie met last October on the court of the NBA Utah Jazz. We watched this amazing family, the Valezs, in awe of being...
Harlie Valdez is out of surgery. Thank you for your prayers.
Harlie is out of surgery. Long screws are now in Harlie’s hip. We need to pray that the screws do not cause more fractures in her bones. They...
Harlie Valdez falls and fractures her hip. Surgery today. Please pray.
Stephanie texted late last night to let us know that Harlie fell. Unfortunately, she suffered tremendously due to her very fragile bones from all of the medications she...
The House of Representatives APPROVES the 21st Century Cures Initiative with a vote of 344-77
The House of Representatives APPROVES the 21st Century Cures Initiative with a vote of 344-77 Posted on Friday, July 10, 2015 · RDLA applauds the House for approving...
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...