The radio stations are filled with holiday music, but as 2015 comes to a close, I find myself listening to an entirely different playlist. In my mind, there are not only songs that make me reflect on the path that my family has so carefully traveled so far, but also the hope and the promise of all the good things yet to come.
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The U.S. Food and Drug Administration (FDA) approved the use of ivacaftor (Kalydeco®) today for people ages 2 and older with cystic fibrosis who have at least one of the following five splice mutations: 3849+10kbC->T, 2789+5G->A, 3272-26A->G, 711+3A->G, E831X.
The U.S. Food and Drug Administration (FDA) today approved ivacaftor (Kalydeco®) for people ages 2 and older who have at least one of 23 residual function mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene.
CF Foundation's $1 Million Investment Helped Drug Known as Cayston® Become a Reality
New Effort Will Search for Potential Therapies Targeting the Most Common Mutation of Cystic Fibrosis
Legislation Would Increase Patient and Expert Participation in FDA Review of Rare Disease Treatments
After a childhood spent running, I had largely given it up by the time I became an adult. But five years ago, it became my outlet. CF and COVID-19 temporarily sidelined me, but as long as there is air in my lungs, I won’t ever give up.
I thought my exercise capacity on continuous oxygen would decrease. Thanks to the support from others and high-intensity interval training, my exercise capacity actually increased.
Although I had my doubts, I was able to hike the Oregon Coast Trail and learn about myself while doing it.