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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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Mary Katherin smiling with a coworker in the CF care center where she works

BLOG

A Message to My CF Patients
Jan. 23, 2024 | 4 min read

Working as part of a cystic fibrosis care team gives me the opportunity to provide the type of personal care I’m passionate about — I just hope my patients understand how much we are invested in their well-being. 

A professional headshot of Mary Katherine
Josh giving a thumbs up at the finish line of a marathon, wearing a medal around his neck.

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How Hard Truths From My Care Team Helped Me Qualify for the Boston Marathon
Aug. 15, 2023 | 6 min read

At times, my pediatric CF care team told me about the possible negative outcomes of my cystic fibrosis. Their gentle support helped prepare me for unexpected good health, and is one reason why I was able to qualify for the Boston Marathon. 

A professional headshot of Josh Weiss
Keith Connolly laying on a couch turned away from the camera

BLOG

As People With CF Live Longer, Their Needs Are Changing
Aug. 2, 2023 | 4 min read

My son, Keith, was diagnosed with pancreatic cancer after an initial focus on CF as the cause of his health issues. With people with CF living longer, we need more awareness of pancreatic cancer in CF individuals due to the potential increased risk.

A headshot of Teresa Connolly
A member of Kinley's care team wearing PPE and showing a toy to Kinley, who is sitting in a clinic room.

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True Teamwork in CF Care
May 30, 2023 | 5 min read

Since my daughter, Kinley’s, cystic fibrosis diagnosis, I have come to rely on her care team. We have become a true team in Kinley’s care.

A headshot of Krista Kuska
A portrait of Lauren with her husband and three children cuddling in bed.

BLOG

The Importance of Self-Advocating After Transplant
May 26, 2023 | 6 min read

My daughter, Lauren, didn’t know that having a lung transplant would greatly increase her risk for cancer until it was too late. Her death has taught me how important it is to know the health risks faced after transplant and our need to advocate for ourselves.

A professional headshot of Gerry Sweeney
Laura Steuer smiling wearing a grey turtleneck standing in front of a blue and white painted wall.

BLOG

How a Small Regional Hospital Helped Me Realize the Value of CF Care
June 22, 2022 | 5 min read

I didn’t realize how important my cystic fibrosis care team was — or how they had my back — until I stayed in a hospital where the staff had little knowledge of the needs of people with cystic fibrosis.

Laura Steuer