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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.

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Annaka Haynes smiling and wearing blue scrubs with a stethoscope around her neck

BLOG

Becoming a Nurse to Advocate for Patients

Living with CF means I quickly became familiar with the patient side of the health care field. My experiences in the hospital have motivated me to become the kind of nurse that listens to and advocates for their patients. 

A headshot of Annaka Haynes
| 6 min read
Matison smiling in a hospital bed holding a plush toy in the shape of lungs

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Voicing My Health Needs Before and After Transplant

I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.

A headshot of Matison Deaton smiling outside
| 7 min read
Nicole Kohr smiling and holding a stage light above her head like a spotlight

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Discovering the Power of Advocacy

Advocacy is impactful at all ages, but the term can sound intimidating. It implies effort, time, commitment, politics, and publicity. As a 30-year-old with cystic fibrosis, I am currently an active member of the CF community, but I was not always aware of the benefits, power, and impact of advocacy.

Nicole-Kohr-Headshot
| 6 min read
Crystal standing outside the Capitol wearing a blue coat.

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Talking About CF Used To Overwhelm Me. I Took 3 Small Steps To Find My Voice.

Sharing your CF story is one of the most powerful things you can do, but that can be hard for some of us. If you want to use your voice but struggle with how to get started, here are three things that helped me.

Crystal Brown
| 5 min read
Cambria standing outside the Lincoln Memorial.

BLOG

Why I Advocate For My Brother With CF

My brother’s optimism despite living with cystic fibrosis has inspired me to advocate, share his story, and use my voice to push for positive change.

Cambria Judd Babbitt headshot
| 5 min read
Fiona-Stevens-Sister-Selfie-Featured-Rectangle

BLOG

Advocating Alongside My Sister With CF

Since I could remember, my sister shared her CF story to raise awareness, and she inspired me to do the same. Now, with this year's Teen Advocacy Day, we finally get to advocate together.

Fiona-Stevens-Headshot
| 4 min read