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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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Cindy speaking in front of a presentation displaying five of her books

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Storytelling as a Path to Change

As an author and activist, I am deeply passionate about both storytelling and advocacy. When these two powerful forces are combined, they become a transformative tool for enacting meaningful change.

Cindy Baldwin smiling while holding a pink rose
May 30, 2024 | 5 min read
Annaka Haynes smiling and wearing blue scrubs with a stethoscope around her neck

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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
March 28, 2024 | 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
Aug. 24, 2023 | 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
June 15, 2023 | 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
March 24, 2023 | 5 min read
Cambria standing outside the Lincoln Memorial.

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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
Feb. 23, 2022 | 5 min read