During my five months in Denmark for a study abroad program, I not only learned more about myself and others, but I became more confident in my ability to take care of myself. Don't let CF stand in the way of experiencing that, or any other dreams.
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Ever wondered what it takes for a potential cystic fibrosis drug to become approved by the U.S. Food and Drug Administration? Here's an explanation of the four phases of clinical research.
Earlier this month, we learned that the new CF drug Orkambi was approved by the FDA. This was such an exciting, memorable and emotional day for everyone in the CF community. We heard from many who were thrilled about the potential for this drug to help people with CF and also heard from those who would not benefit from this breakthrough. Following are some reactions from those this impacts the most: people with CF and their loved ones.
During our family round trip from Oklahoma to Florida, I learned a thing or two about traveling with a CF tot.
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.
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.
Thinking of how you will take care of your health while traveling with CF can be very intimidating. For 28-year-old Stacy Motenko, preparation is the key.
After what seems like an hour and too many clicks to count, you finally did it. You booked your flight! A couple weeks leading up to your departure date, panic starts to set in. You go into operation “no one better get me sick” mode.
Hear how frequent flier Stacy Motenko keeps herself organized as she turns traveling with CF into a manageable affair.