I am running this year’s New York City Marathon for the Cystic Fibrosis Foundation. Growing up with CF has presented many challenges in my life such as daily treatments and medications, difficulty keeping up in sports, several admissions to the hospital, and the reality that my future would be shortened because of this disease.
My battle with CF has been rocky, but the first breakthrough for me was a medication called Orkambi I started my freshman year of high school. This new pill helped decrease my coughing and improved my lung function, while giving me more energy to pursue the activities I enjoy such as playing sports and keeping up with my friends. Although it seemed like my condition was turning around, I was hospitalized yet again in 2018 going into my senior year of high school because of my CF and was a reminder that my fight with this disease was far from over.
In 2019, a new medication called Trikafta came onto the CF community scene and this has been a miracle drug for so many of us. I can say without a doubt that this medication saved my life, along with thousands of other people with CF, and gave us a sense of hope that we could take control of our lives.
The life expectancy for CF has skyrocketed in recent years and is a direct result of the never-ending commitment by the CF community and CF Foundation in our fight against CF. However, there are still thousands of people with CF who are not eligible to take these life saving medications, and far too many who are hospitalized, require lung transplants, and sadly lose their battle to this disease every year.
With your support, the CF Foundation can continue to fuel groundbreaking research, support those with CF, and advance specialized care for all who face this devastating disease. On behalf of all those who have CF, thank you for your continued love and support. We could not do this without you, and we will not stop until every single person with CF can live a life free of this disease!
