I recently attended the Cystic Fibrosis Foundation Lung Transplantation Summit. Many of the areas for improvement cited by the experts matched what I have seen as the mother of a two-time double-lung transplant recipient.
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March on the Hill brings a mix of new and familiar faces to Capitol Hill every year. The connections and stories that our advocates share with their elected officials are making lasting impressions that impact the entire CF community. And as this event has grown, so too has the cystic fibrosis story.
Two Phase 3 clinical trials of tezacaftor (VX-661) in combination with ivacaftor (Kalydeco®) showed positive results, Vertex Pharmaceuticals announced today.
Sometimes during weak moments, when my lung function has dropped despite doing everything in my power to hold off the destruction, I think, “What's the point?” Then I remind myself of the larger goal …
Cystic fibrosis can't take living away, especially when one loves life!
When my 8-year-old daughter with CF found out that the disease is potentially fatal, I was grateful for her optimistic views on life and death. But deep down, I was saddened with the thought of a cure being so far away that I wouldn't be around to see it. Today, my fears have dwindled.
When I ran into a particularly difficult situation with my last job, the “d” word entered my lexicon for the first time: disability. While my life doesn't look like I thought it would, I have come to accept where I am and gained a new perspective on work and life.
It can be difficult to find time for daily CF treatments in your already jam-packed lives, but your respiratory therapist can help.
As a high school nurse responsible for 1,200 students — three of whom have cystic fibrosis — I'm finding this upcoming school year to be particularly challenging. Here is how I implemented a plan of action to keep each student safe while balancing their specific needs.
One of the questions that we ask our representatives during the Foundation's signature advocacy event, March on the Hill, is to join the Congressional CF Caucus. Here is my story of what happened when I (accidently) asked a senator to join that caucus.