Greetings!
Today, I read something hopeful. It’s a blog post by an Australian with cystic fibrosis who writes about her health improvements after taking Kalydeco for the last 2.5 years.
The revolutionary drug addresses the cellular dysfunction at the heart of cystic fibrosis. The type of CF the writer has is not the same as Eli’s, but we hope drug combinations being studied currently will have the same positive outcomes for our lil buddy and his friends. There are 1,000 mutations of CF, but most people have at least one copy of the DeltaF508. Eli has two. In a way, this is really good; it’s getting the most attention in research. Fingers crossed that my son’s disease will be cured soon.
I also want to share really good news for the Oklahoma City Sooner Chapter.
The owner of my paper, Phil Anschutz, runs a foundation that has donated $25,000 to the Sooner chapter of our Cystic Fibrosis Foundation. It will go to support local research at the University of Oklahoma Health Sciences Center.
Thank you so much, leaders of The Oklahoman, Mr. Anschutz and those running his foundation for supporting this cause. And, thanks to the staff of the CF Foundation (Hey Celia I’m talking to you) for writing such a lovely grant proposal.
I sent thank you to everyone involved including a hand-written notes, pictures of Eli and some of the articles I’ve written about buddy boy and how his diagnosis has changed our life.
Listen: I’ve worked at places that wouldn’t throw $5 toward an employee’s cause.
We got $25,000.
Not bad. Not bad at all.
xo
To the cure!
Eli, cowboy
