Mackenzie Kokoski

Songwriter, “Forever Changed”

I was diagnosed with cystic fibrosis at birth, and in October 2019, I underwent a double-lung transplant. I wrote a song called “Forever Changed” as a letter to my younger self and my selfless organ donor. This song follows the story of my life with CF and how I felt facing the inevitable transplant. This song is telling my younger self that even after I become “forever changed” with new lungs, that little girl will always be a part of me and my donor will now be a part of me, too. I wrote this for anyone who is fighting or has fought battles. My music video features familiar faces within the CF community. 

Music has always been at the forefront of my life and after transplant, it was put on my heart to dive into songwriting more. Before my transplant, I sang breathlessly with only 19% lung capacity. Just a few days after surgery, I sang with a musical therapist who helped me realize I no longer needed the oxygen I was scared to stop using. I sang with fearlessness and reclaimed my passion for music. Thank you for taking the time to read about the most special project I've released. I hope you find your own story within this song, and I hope it motivates you to know your strength and ignite your fire.

Katherine Lockwood

Author, My Body Beeps!

I grew up with cystic fibrosis, and like many others with CF, I later developed cystic fibrosis-related diabetes (CFRD). When I started using an insulin pump and continuous glucose monitor, people would often ask, “What’s beeping?”

My response: “It’s me. My body beeps!”

That phrase stuck with me. It became a symbol of resilience — and the inspiration behind my picture book, My Body Beeps! Growing Up With Diabetes.

In the story, Katie, who has diabetes, forms a close friendship with Olivia, who has asthma. Together, they discover that having medical needs doesn’t hold them back from fun, play, or friendship. Their connection highlights how shared experiences can build empathy, support, and confidence.

Perfect for children ages 3–8, this book offers a thoughtful approach to discussing chronic conditions with young kids. It reassures them that managing their health doesn’t mean missing out and encourages pride in who they are — beeps, buzzes, and all.

The back of the book includes a page explaining different types of diabetes, including CFRD, and is ideal for starting family conversations. Whether a child has diabetes or loves someone who does, My Body Beeps! helps make room for understanding, resilience, and joy.

Heather McCoy

Songwriter, “65”

I am Heather McCoy, a CF warrior who has survived two double-lung transplants and a kidney transplant. I am a musician and songwriter and always wanted to write a song that could represent my experience with CF. One day, during my daily exercise I was thinking about what my ROSE UP fundraiser could be, and I thought, “I want to write a CF song people can rock out to, whether they are exercising or doing their therapy for the day. Something that empowers them and shows them there is someone who understands what it feels like to live with a disease that can be so cruel — yet through it all, we power through and live the best to our abilities.” 

Music is a way of coping for me, and I wanted to provide a song that — whether they were going through a hard time or things were going well for them — reminded people with CF that we are a community and that we understand each other’s pain and struggles, even if we all have different journeys with CF. It sparked more writing in me, and I have written several other songs since. Seeing the feedback from this song is exactly why I wrote it. I even created a video of children with CF doing their vest and nebulizer treatments to it. You can find “65” on all streaming platforms.

LaDarien Rancher

Author, Layla’s Superpower

Layla’s Superpower is a heartwarming children’s book inspired by my daughter, Layla, who lives with cystic fibrosis. The story follows Layla, a bright and spirited girl who views her treatments and daily routines as part of her superhero training. Through her imagination and resilience, Layla shows young readers that true strength comes from within and that everyone has a superpower, even if it looks different.

I wrote this book not only to honor my daughter’s courage, but also to provide representation for children living with chronic conditions who often don’t see themselves in stories. As a father and educator, I believe in creating books that empower and educate.

In addition to its uplifting message, the book is packed with tools to support learning and engagement. It includes built-in reading comprehension questions, a glossary of key terms related to cystic fibrosis and emotions, and guided discussion prompts to help families and educators talk more deeply about the story. These features make Layla’s Superpower a meaningful resource for classrooms, libraries, and homes.

This book celebrates courage, inclusion, and the idea that our challenges can shape us into everyday heroes.

Zachary Roberts

Host, “Breathe Easy Podcast”

The “Breathe Easy Podcast” was born out of my own experience living with cystic fibrosis. As someone who knows firsthand how isolating chronic illness can be, I created this platform to connect with others, spotlight real stories, and amplify the voices that are too often left unheard. What started as a personal outlet quickly grew into a mission to build a space where vulnerability, humor, struggle, and resilience could all exist at once.

This podcast isn’t just about CF — it’s about navigating any health challenge with authenticity. I interview people from all walks of life: fellow patients, caregivers, doctors, and advocates. We laugh, get real, and talk about everything from hospitalizations to hope. My goal is to bridge the gap between the clinical and the human sides of illness.

At the end of the day, I want listeners to feel like they’re not alone — like someone finally “gets it.” Whether it’s a powerful story, a sarcastic joke, or an eye-opening perspective, “Breathe Easy Podcast” is about creating community through conversation.

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