My Xtreme Hike Story
We hike for our niece, Cameron!
My Hike Story
This September, while Matt and I are in intense training for our second Xtreme Hike, our niece Cameron will turn 2 and a half years old. Cam was diagnosed with cystic fibrosis at the age of 5 weeks, and she is a fighter who has already endured more than many of us will in a lifetime: major surgeries for an intestinal blockage at birth, numerous hospital stays (including one in January of 2024), countless blood draws, and daily therapy routines. However, she is also fortunate to have the CF mutation that allows her to be eligible for amazing CTFR modulators – a direct effect of the tireless efforts by the Cystic Fibrosis Foundation, scientists, and clinicians over the past decades.
After starting on Orkambi at the age of 1, Cameron was able to switch to Trikafta, an even more powerful modulator, at age 2, and so far she is doing great. Modulators like these are an incredible scientific development helping so many in the CF community, but the side effects can be worrisome, and they only work for certain CF mutations.
Cystic fibrosis is as complex as it is rare. Though many understand CF to be a disease of the lungs, it also impacts other organs like the pancreas, and symptoms can vary widely between individuals. Because it effects only 40,000 children and adults in the United States – and approximately 105,000 people worldwide, funding for improved and diverse treatments, as well as a cure, must come from within. The Cystic Fibrosis Foundation is the world’s leader in this fight.
We’ve come so far, but there’s still so much work to do. We will not stop hiking until all those with cystic fibrosis have a cure. We will not leave anyone behind.
Your support makes a difference.
By donating to my fundraising goal, you will help advance our mission for a cure for all. Please consider joining us and helping make CF stand for Cure Found.
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