CF Community Blog

The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives -- the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.

More community posts


Despite COVID-19, I Participated in a CF Clinical Trial

I'm a big proponent of participating in clinical research, but COVID-19 made me think twice about participating in a clinical trial that required six hospital visits. However, a screening visit reassured me that the researchers were taking all the necessary precautions.

Jenny Livingston
| 5 min read


Jumping Over My Fear to Join a CF Clinical Trial

I used to be afraid of the thought of participating in a clinical trial for a cystic fibrosis medication. But when my doctor asked me recently if I was interested, I jumped at the chance. My desire to help myself and the CF community finally outweighed my fears.

Amye Phinazee
| 5 min read


Why I Took a RARE Opportunity to Help Myself and Others

Participating in the RARE study gave me an opportunity to play a role in finding a therapy that one day could help me and other people with CF who have two nonsense mutations.

Joey Disser
| 7 min read


Participating in a Clinical Trial Is Empowering

Participating in clinical trials can be scary, but the sense of empowerment you get from knowing that you are contributing to a cure outweighs any second thoughts.

Morgan Barrett
| 4 min read


Arjun’s Planet-Sized Spirit

My son, Arjun, has had the deck stacked against him in some ways. He was born early, with cystic fibrosis, and needed surgery. His resilience, and my hopes for his future, keep me inspired.

Arathi Cole
| 3 min read


Ask a Case Manager: Health Insurance, Living Expenses, and Clinical Trials

Since Cystic Fibrosis Foundation Compass launched last year, we've learned so much from the community and have helped people with cystic fibrosis find creative solutions for all kinds of problems. That's why we are excited to unveil our new “Ask a Case Manager” blog series.

Anne Willis
| 5 min read