We are all a “Lone Ranger”
We all have our own “Fight Song”
RUN will “Stand By You”
Together we are RUN family
We Can Do Hard Things
When Rachel Platten released “Fight Song” on February 19th, 2015, it was such an inspiration for our family as well as the entire rare and undiagnosed community. Her music continued to inspire and motivate our family through “Stand By You” and “Lone Ranger” as well as all of her incredible music.
On October 10, 2015, RUN’s Anniversary Video used Rachel Platten’s music. We have been a family now for over three years. The video brings brings back so many memories. Our children have all grown over the past few years. The good news is that some of our children are doing incredibly well. However, there are many of our rare and undiagnosed children still suffering every single day.
On May 20, 2016, RUN’s #RareTeen Video had a special surprise in it! My dear friend and RUN Advisory Board Member, John Neal of Team Krabbe Strong, arranged for Rachel Platten to send a personal video to our RUN teens sending love and strength…
“This is Rachel Platten. I just want to send you a humongous amount of love and strength.
You are incredible and you are very loved.”
Words cannot express how Rachel Platten’s music has touched our hearts. It was such an incredible honor to meet her in person. It was a dream of mine as well as for my children.
Thank you to the entire Larry H. Miller family for hosting a Sneak Peek Concert for their employees at the new Vivint Smart Home Arena.
Walking into the new Vivint Smart Home Arena for the first time was such an emotional moment in time that we will always remember. Our tickets were the first tickets to be scanned in the new arena and we were so excited to be able to say hello to our Utah Jazz friends and family again. We are just so very honored to be back with the Utah Jazz.
Thank you again to John Neal for arranging the meeting with Rachel Platten and thank you to Michael Rosenthal, Rachel Platten’s tour manager, for making it happen! Rachel Platten usually meets her fans after her concerts. She agreed to meet us before the concert due to Oskar’s sensory issues and his constant headache. The noise was going to be too much for him. We were able to listen to her soundcheck and get pictures with her! It was an incredible moment and a memory that will last a lifetime.
Through all of the years of pain and suffering, we were able to have a moment in time of pure happiness. Listening to her music will always bring back a memory filled with love and inspiration.
Thank you Rachel Platten
You continue to inspire all of us through your music and your journey.
Thank you all for your continued support, love and prayers.