Works by the CF Community: Summer 2023

We’re highlighting three creators who are helping raise cystic fibrosis awareness. They’re voicing the variety of ways that people experience the disease by sharing a part of their life through their works.

| 4 min read
A professional headshot of Sarah Dobson
Sarah Hyndshaw
An adult with CF reading a book while using her vest and nebulizer
Jeremy Moore standing with his arms crossed in front of a white background

Jeremey Moore
Author, Trail Map to Muscle
 
Trail Map to Muscle is a guide for those who want to know how to build muscle and get in shape, whether they have cystic fibrosis, another genetic disease, or anything that holds them back from building muscle. I walk readers through deciding why they want to get in shape, to exactly how to do it.  
In 2004, I started my fitness journey by learning everything I could about lifting weights and getting in great shape to change my overall look. Little did I know how much more difficult it is for someone with CF to achieve results. Everything I learned over 15 years of trial and error is included in the guide so others have the potential to achieve results in half the time it took me — and without making all the same mistakes I made.


Andy Lipman smiling in front of fall foliage

Andy Lipman  
Author, CF Warrior Project Volume 2 

I’m Andy Lipman, a 49-year-old with cystic fibrosis. My book, The CF Warrior Project Volume 2 shares the stories of people with cystic fibrosis and those who fight for them and made a difference in our community. The book was inspired by my mother, Eva, who fought for me for nearly half a century while I fought cystic fibrosis. The book includes highlights of those who played a role as trailblazers in the cystic fibrosis community, parents (including my mom) who advocated for their children, and of course those who were born with this disease and continue to conquer it in their own way. Learn more about our movement, as well as our books, and help us as we continue to fight for a cure.


Nicole holding up her book, My Pants, and pointing at it while smiling

Nicole Kohr
Author, My Pants 

Storytelling is the strongest form of patient advocacy. It’s a motto that I live by and the mission behind my nonprofit, Colie Creations Inc. I use a variety of platforms to tell stories including musicals, children’s books, and blogs. 

My Pants was my second children’s book publication. The story follows Celana, a seemingly neurodivergent toddler, through a series of doctors’ appointments. Her parents advocate on her behalf while Celana clings to her pants — a personified coping mechanism. 

The story was inspired by my childhood anxiety and the extent to which my mother used therapeutic play to help me cope. Growing up with cystic fibrosis, I spent more than half of my life in an isolated hospital room. My mom continuously set me up for success by being a very supportive and adaptive parent in addition to navigating the healthcare system with creativity and grace.
 
With that said, I wanted this book to reflect more than just the symptoms and treatments that chronically ill patients experience. It needed to additionally shine a light on the emotions that we overcome and the passion with which our families advocate. To lighten the heaviness of the subject, I told the story from Celana’s point of view with a maze of naïve puns and idioms.

In the end, all my stories are just extensions of my truth. I’m always excited to share these truths with the CF community in the hopes that they’ll relate, laugh, and share. Visit Colie Creations to read more about my journey with CF and purchase my books.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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A professional headshot of Sarah Dobson

Sarah is a communications specialist on the Community Engagement team at the Cystic Fibrosis Foundation. In her role, Sarah supports the marketing and promotion efforts for community programs like community conferences, CF Peer Connect, Community Voice, Tomorrow's Leaders, and Compass. She also manages the Community Blog. In her spare time, Sarah enjoys gardening, reading, and wrangling her pitbull-boxer mix, Beau. She currently lives in Georgia with her husband, an adult with CF. 

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