The CF Foundation is focused on bringing forward new therapies to help people with CF enjoy the best health and quality of life.
As the mother of a child with CF and volunteer for the CF Foundation, I know first-hand the extraordinary things that Dr. Bob Beall has done for our community, and I am grateful for the legacy of hope that he leaves behind.
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.
I've lived my whole life like it has an early expiration date. Recently, a drug was FDA-approved that could change that. I'm grateful, but I'm also scared…
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.
Researchers are exploring treatments that will keep people with cystic fibrosis as healthy as possible until a cure is found. In the first plenary at the NACFC, two CF scientists explain the progress of current research.
For those of us without a medication that targets our cystic fibrosis mutation, it's important to remember that our life with CF is a marathon.
Although I had been told that my coughing would stop, I wish I had known more about the transformative change that Trikafta® would have on my life. It has almost made me wistful for the time when I was sick, back when I was more in tune with what my body was experiencing.
After decades of identifying myself as Monique, “the girl with cystic fibrosis,” I didn’t know who I was anymore after Trikafta changed my health for the better.
Now that I am feeling healthy on Trikafta®, I no longer feel special for thriving despite the challenges of cystic fibrosis. I don’t feel like I belong in the CF community anymore, and I miss that sense of camaraderie that comes from a shared struggle.