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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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Matison smiling in a hospital bed holding a plush toy in the shape of lungs

BLOG

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

BLOG

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.

BLOG

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
Abbe-Granelle-Jamie-Hospital-Featured-Rectangle

BLOG

My Life Before and After the Affordable Care Act

Having two sons living with cystic fibrosis, I struggled for years with the financial burdens and restrictions of the insurance market. Since the Affordable Care Act was passed in 2010, I no longer have to worry about lifetime caps and astronomical premiums -- two issues that caused enormous grief for my family.

Abbe-Granelle-Headshot
| 7 min read