Eight years ago I knew almost nothing about cystic fibrosis. When I joined the CF clinical research team at the University of Utah in July 2013 I had no idea that it would change my life.
I was lucky enough to enter CF research during what could be called the golden era of CFTR modulators. Ivacaftor had just been approved by the FDA for certain mutations and it was literally changing lives. At the time I had no concept of how groundbreaking these medications were not just for CF but for pharmaceuticals in general.
The turning point in my CF education occurred when I attended the North American Cystic Fibrosis Conference, conveniently held in Salt Lake City in 2013. I learned more in three days than I had in the previous five months. My biggest takeaway was how the CF community is cohesive, driven, and incredibly welcoming.
Since that conference I have been privileged to become a part of the community. In addition to my work as a research coordinator on over a dozen clinical trials I’ve participated in Great Strides, presented at conferences, and helped start the adult patient advisory board at our care center.
Most importantly I have met countless incredible people both with and without CF, many of whom I now call friends. I’ve worked with study participants from ages 14 months to 50+ years. I’ve been able to see some incredible things that I didn’t even know were possible eight years ago, including the approval of the latest CFTR modulator, the triple combo.
CF research isn’t always easy. Not every new therapy produces groundbreaking results, and those that do don’t always work for every patient. In spite of the difficulties it is the CF community that motivates me every day to keep moving forward. I am privileged and humbled to contribute to such an amazing cause, and as strange as it sounds I am grateful CF came into my life. It has completely changed it in the best way.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, and friends who struggle every day just to breathe. I walk for them. Will you join me and support my fundraising goal?
Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do. I will not stop striding until all those with cystic fibrosis have a cure. We will not leave anyone behind.
Please support me!
We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Together, we can make CF stand for Cure Found. Please help me reach my fundraising goal!