Works by the CF Community: Winter 2023

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

Dec. 14, 2023 | 7 min read
A professional headshot of Sarah Dobson
Sarah Hyndshaw
Two people sitting next to each other on a couch reading a book together

Cindy Baldwin
Author, No Matter the Distance

A headshot of Cindy Baldwin

No Matter the Distance is the story of Penny, an 11-year-old girl with cystic fibrosis who befriends a lost dolphin in the creek behind her house and hatches a plan to help get the dolphin back to its pod. I've always wanted to write a book about cystic fibrosis, but it took me until my fourth published book until I was ready to explore it in fiction. 

No Matter the Distance isn't based on my life, but it is directly inspired by many of the real-life experiences that defined my tween years — my phobia of needles, how depressed I felt during middle-of-the-night nebulizer treatments when I was sick, the exhaustion of home IVs. Like Penny, I struggled with loneliness, coming of age in a time when CF cross-contamination protocols were beginning to take effect around the country. And like Penny, I found new life in connecting with other people with CF online and realizing that I could have vibrant, dynamic relationships with people just like me... even if we couldn't meet face-to-face. 

The ultimate message of No Matter the Distance is that we are connected to our loved ones by invisible threads of love, whether they're nearby or far away, whether we see them around the dinner table or on a phone screen. No Matter the Distance is my love letter to my CF community, who have lifted and supported me through so much in my life.


Morgan Barrett
Host, Makers, Dreamers, Doers

A headshot of Morgan Barrett

I started the Makers, Dreamers, Doers podcast in March 2023 while working a job that offered me little in the way of mental or creative stimulation. I began attending ‘story slams’ at my local arts center and somehow had the courage to tell my own story at the first one I attended. It sparked something in me. I thought I was terrified of speaking in front of people. I thought I hated the sound of my own voice. But it turns out those were just narratives I had been telling myself for a long time. I thought to myself, “What else can I do that I didn’t know I could do?” Thus, the podcast idea was born.


Makers, Dreamers, Doers is a combination of sharing my writing and talking with guests about stories that I think are really important, but that I don’t have the lived experience to tell myself. For example, I talked with my friend, Claire, about her experience as a transgender woman. I learned a lot about her experience, and I know for sure that our conversation has opened hearts and minds.


I think podcasting is a great medium for storytelling because it’s so accessible. People can listen to it on the go or while they do other things. We don’t always have the time to sit down and read, but we can usually make time to listen to a podcast episode.


Michelle Bowers
Author, We Can All Help!

A headshot of Michelle Bowers

"I guess you'll have to write one." That was a challenge from my sister after hearing me grumble that I couldn't find a book about cystic fibrosis for my 8-month-old son, who was diagnosed with CF at 1 week old. 

I could have easily laughed her off, but something lit up inside me when she mentioned it. I picked up my Apple Pencil and haven't been able to put it down since. That challenge ultimately led to me writing My CF Book — which focuses on clinic visits and all things CF care — and my most recent title, We Can All Help!


We Can All Help! explores how everyone can fight germs to help others stay healthy and why it's significant for people living with cystic fibrosis. Whether you talking about CF to a classroom of preschoolers for the first time or reading a bedtime story with your CFer and their siblings, We Can All Help! is the perfect book for you. Young readers will see children demonstrating simple germ prevention practices like 'we can cover our noses when we sneeze' or 'wash our hands after we play outside.'


I wrote this book for my son and all those living with CF so that they may see themselves as the hero of their own stories. I hope these books go out into the world and do some good — may they find someone who needs them. 



Medora Frei
Author, These Are My Flowers

Medora Frei standing outside and holding a painting of hers over her head

I grew up without ever hearing the term cystic fibrosis — but at 18, it would become part of my everyday vocabulary. I’m Medora Frei, an abstract artist from Minnesota. These Are My Flowers: My Story of Composting Trauma Into Colorful Art is a compilation of art, poems, and memoir-style stories. I share my journey of being diagnosed with cystic fibrosis at age 18, my husband’s traumatic health scare, and a childhood uprooted by divorce. In the book, I explore the many ways art has been a way for me to turn my pain into something meaningful and new. The book also includes a guide for an intuitive painting session you can try yourself. I wrote These Are My Flowers to help others be able to transform their pain and feel less alone.

 


Emmanuel and Ashley Garcia
Authors, The Mark of the Breathless

Emmanuel Garcia and his wife Ashley sitting together on a sofa and smiling

Our youngest daughter, Eliana, was diagnosed with cystic fibrosis over a year ago, and for months after the diagnosis, we searched for a way to inform ourselves — and eventually her — about the condition. Throughout my life, I've escaped to fantasy realms, which brought me comfort. So, searching for a children's fantasy book about cystic fibrosis was a natural first step. When I was unable to find any, my wife and I decided that we wanted to make sure that our daughter — and any other child with CF — had a fantasy to find comfort in.  

The Mark of the Breathless is the first book of the Adventures in Avenrie series and chronicles Princess Ellie, who was born with a rare mark mirroring the challenges of cystic fibrosis. We've interwoven facts about the condition into the narrative, aiming to educate young readers and their families in an engaging, age-appropriate manner.


Adventures in Avenrie is grounded in three core principles: 

  • Avenrie stories will always be free on our website 
  • We collaborate with CF experts to ensure our books have accurate information
  • We are dedicated to cultivating and sustaining a supportive online community

In Avenrie, we believe that by journeying together, we conquer as one.  
 

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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