Blog

We’re highlighting three creators who are helping raise awareness for cystic fibrosis. They’re voicing the many ways people experience the disease by sharing a part of their life through written and spoken works.

Living in rural Virginia has made it difficult to access the care my son with cystic fibrosis needs, but the support of our community and our upcoming move to more easily access care gives us hope as we continue to navigate this journey.

Living with cystic fibrosis — and all the hardships that go along with it — can make it tempting to isolate myself from the people around me. But I’ve learned that fostering a strong support system is just as important as doing my daily treatments.

I gained a new perspective on my wife’s kidney issues and realized the delays and complications actually brought unexpected positive outcomes, leading me to reevaluate what represents good and bad news in our journey with cystic fibrosis.

Five years ago, I was too weak to walk at my local Great Strides event. My cystic fibrosis was winning. But after receiving a double-lung transplant, I was given the life I always dreamed of and now I walk proudly.

When my daughter, Nani, was born, I got to know the routine for her cystic fibrosis and was able to introduce her to the practice of meditation. Years later, when I began to lose my singing voice and could no longer perform, I was surprised to learn I have CF, too.