Recent Posts
Page 41 of 50
The Rare Genomics Institute’s Amplify Hope Initiative: Raising funds for Genetic Sequencing
Amplify Hope Rare Genomics Institute is inviting patients in need of genetic sequencing to join the Amplify Hope Initiative, a new study to help undiagnosed rare disease patients...
Harlie Valdez: Update by Stephanie last night
Stephanie: Harlie had a rough week battling her fevers of 102 and vomiting blood. She also had a hard time keeping her oxygen at a safe level. At one...
Rare and Undiagnosed Network, Inc. (RUN) is officially a 501(c)(3)
We planted a seed. And, now we will watch RUN grow together. Thank you for everyone that is helping RUN become something more than we ever imagined. We...
Stephanie Valdez: Update on Harlie today
Longest night ever.. After receiving the cytoxin treatment and methotrexate and 1000 mg of steroid yesterday, Harlie started feeling sick about 9 pm last night. She started vomiting...
Gabe Valdez: Harlie’s update
Just wanted to update everyone on Harlie. Harlies spirits have been good the last couple days and she’s pushing herself in physical therapy, but she has lost so...
In Honor of SWAN USA Undiagnosed Day Today: Please support www.iamundiagnosed.com
In honor of Undiagnosed Awareness Day April 24th 2015 by SWAN USA, Amy Clugston, we would like to support Alex of IamUndiagnosed.com. Thank you to the UndiagnosedFilm producers to...
Gabe Valdez: “RUN HARD, RUN FAST, JUST RUN”
GABE SHARES THIS SUNDAY MORNING… Today is the 231st day of our journey. It begins at 3:00a. My baby calls for me because she has to go to...
Harlie Valdez: Losing a lot of blood. Waiting for next steps. Please pray.
Stephanie Valdez updated us this morning: “Harlie’s hemoglobin has dropped down to 5.2. Her heart rate is extremely high. They are giving her 2 units of blood ASAP....
Handmade blankets donated to RUN families by Debby
From Megan: Debby started making beautiful minky blankets for her family members about 10 years ago. “I learned how to make these blankets from a friend who was making one for...
Harlie Valdez: Amy Holtz shares about the candlelight vigil last night+ update at end
The first time I met Harlie Valdez was at a softball game. My daughter was competing against her in a tournament. I was mesmerized by so many things...