Anver (Dad) Larson

Dad's page!

My Great Strides Story

We joined the CF Family almost five years ago. There have been many ups and downs while on this journey, but we can easily say there would have been more "downs" without the help of the CF Foundation and people like you who donate money to our CF Family.

After the fog cleared from Diagnosis Day and we started understanding what all of this might look like, I remember finding the CF Foundation's website and having the realization that they were almost a sort of long-lost Big Sister or Brother we'd never known we had. And, not just that, but they'd been watching over us, and fighting for us from background our entire lives.

We were in the last wave of people who received a diagnosis at a time before Trikafta has been approved. We had medications to start immediately, sure, but they were all to manage problems. They were meant as a defense mechanism rather than offense attack against this thing we call Cystic Fibrosis. Sitting and thinking about how there were no game-changing medications available for us (while some others met the criteria) was about as gut-wrenching as it gets. I still remember scrolling through the lists of mutations eligible for the medications that were approved at the time - just hoping our (incredible!) medical staff (and us) had somehow missed that we were in fact on the list. To no avail. Then, six months later, our lives changed. Trikafta was approved and we had Hope. It took a few years, but now we're on Trikafta and we have the wind at our backs. This wouldn't have happened without our Big Sister/Brother (The CF Foundation) watching over us, and fighting for us, before we ever even joined this family.

Now, Trikafta only works for 90% of our CF Family.
We know, and remember, what it feels like to be left out. To not be on The List. We will not stop advocating for Our Family until the list includes everyone, and then we can turn our focus to finding a cure once and for all.

Thank you for reading this. Every dollar counts!