I felt unrelenting hope watching the first plenary of this year’s North American Cystic Fibrosis Conference. As I learned about progress that has been made in sickle cell disease, and how those learnings may help us develop a genetic therapy for CF, it showed me that the CF community is supporting people like me who can’t take modulators.
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When I realized how much my nutrition strategy was impacting my performance as a marathon runner, I decided to reevaluate my plan to be more intentional about how to best fuel my body before running.
When my wife convinced me to undertake a hike up to Angel's Landing, I pictured the physical challenge of it, not the friendship we would develop with another couple on the way up.
After starting Trikafta, I decided to try running again, and I grew to love it. Because of COVID, I had to conduct my own races in 2020, but now I have joined a running group and am preparing to run my first marathon at the end of September.
My younger sister and I both have CF. Growing up, I tried to be a role model for her in managing the day-to-day challenges. Today, she is the one inspiring me.
I’ve been a runner for most of my life. After having to drop out of three previous marathons because of my CF, I was finally ready to run this year’s Boston Marathon.
For me, exercise has been a magical treatment for my cystic fibrosis. I have found that our bodies respond to the demands put on them, so train your body to meet a fitness goal, and your strength and endurance will improve.
After I was told to stick with sprints because my cystic fibrosis would make it hard to become a distance runner, I was determined to prove that this disease won’t hold me back from my goals.
La fibrosis quística (FQ) es una enfermedad genética. Escuche las presentaciones de los expertos, el Doctor Fadel Ruiz, director del centro de fibrosis quística de Baylor y el Doctor Carlos Milla, director del centro de fibrosis quística de Stanford y sus respuestas a las principales preguntas de la comunidad sobre terapias genéticas para la FQ. El panel fue moderado por Sylvia Mazuera, madre de dos hijos, el menor de los cuales tiene FQ.