Staying healthy with cystic fibrosis takes work every single day.
For Kadyn, that means constantly prioritizing her health just to feel “normal.” Staying well isn’t something that happens by chance — it requires daily treatments, nutrition, and exercise.
“I wish people understood how much effort goes into staying healthy every single day.”
But for Kadyn, the hardest part isn’t always physical.
“The mental side is really overlooked, especially with body image and consistency. It’s hard to stay confident and keep routines when getting sick can set you back physically, even when you’re doing everything right.”
Through countless surgeries and challenges, CF has shaped Kadyn into someone disciplined, resilient, and deeply driven.
Her message to others living with CF?
“Keep showing up for yourself, even on the days when it feels exhausting. Progress isn’t always perfect, but the effort you put in matters more than you think.”
Today we celebrate the many ways motherhood shows up in the cystic fibrosis community — with love, resilience, and the everyday moments that matter most. Happy Mother’s Day! 🌸
Yesenia spent 17 years searching for the answers behind her symptoms — until she was finally diagnosed with cystic fibrosis.
“Learning I had a lifelong condition while still figuring out who I was changed the way I understood my health and my life. There wasn’t much information or many resources available for someone my age navigating CF for the first time.”
As she began to make sense of her diagnosis, Yesenia quickly realized that managing CF required far more support than what happened during clinic visits alone.
“Navigating college and the workplace pushed me to quickly learn my rights and how to advocate for myself because that kind of guidance wasn’t readily available.”
Those experiences shaped how Yesenia shows up today. As a Mexican woman diagnosed later in life, she’s passionate about raising awareness and supporting others who may be walking similar, often overlooked paths.
“Many people believe newborn screening will always detect CF, but rare genes like mine can sometimes be missed. The more we speak openly about our experiences, the most we can help others living with CF feel informed, supported, and less alone.”
For KC Cook, living with cystic fibrosis means making decisions every day that most people never have to think about. Listening to his body. Adjusting plans. Constantly recalibrating life around what his health is asking of him.
“Just because this disease is invisible at times doesn’t mean it isn’t an incredible burden to live with. It influences every decision we make.”
One thing KC wishes people understood — including within the CF community — is that no two CF experiences are the same.
“Some of us have harder or easier paths than others. We may not understand each other’s battles, but we should always be supportive and grateful for what we do have.”
He’s also wishes that more people realized that while CFTR modulators marked an amazing step forward, they are not a cure.
“Members of the CF community, myself included, still don’t benefit from these therapies. We can’t slow the momentum of research. There’s more work to be done.”
To others living with CF, KC has one message:
“Never give up. This life can be precious if we let it be. Resilience isn’t taught, it’s learned. You will find that you are capable of so much more than you think.”
Cystic fibrosis is a genetic disease that affects the lungs, pancreas, and other organs. In honor of CF Awareness Month, help share these statistics to raise greater awareness!
Cystic fibrosis isn’t always visible, and some days feel harder than others. Let us know in the comments: What helps you get through the more challenging moments?
POV: You raised more than $1,000 for Great Strides and earned the 65 Roses champion bonus gift.
Meet Julia, an adult with cystic fibrosis and one of this year’s national ambassadors, showing off the 20 oz travel mug you can earn while fundraising for a cure for CF.
Visit the link in our bio to learn how rewards like this can be yours.
"For most of my life, 40 was my stretch goal. But now I’m realizing that 60, 70, or even older might now be possible. Suddenly, the financial assumptions I built my life around no longer make sense.
I’m sure many people can relate to this. Prioritizing experiences over savings. Medical costs eating into one’s ability to save. Choosing careers with flexibility instead of long-term financial growth. Assuming retirement planning doesn’t apply to you. But now… now it does.
There’s an emotional adjustment that comes with this shift that people outside the CF community don’t always see. When life expectancy increases, it’s not just a statistic — it changes the entire framework of how you view your life. I began to ask questions like:
- What does long-term financial security look like for me?
- How do I save for retirement while still managing high healthcare costs?
- What happens if treatments change again?
- What if I outlive the timeline I once planned for?
To me, this is both exciting and unsettling. Planning for retirement used to feel unrealistic. Now it feels like an act of optimism.
Throughout all of this, my biggest supporter was my spouse. He and I got married in 2016, before modulators were in place. He was with me as I started a modulator and watched my lung function change, and hospitalizations and lung infections decrease. And he is currently with me as we navigate financial decisions together. We could grow older together and retire!? It still feels like a dream." - Brandon Wright, an adult with CF
This National Volunteer Week, we’re proud to celebrate volunteers like Dominique Fox, who is pictured with a friend at her local Great Strides.
When she met her husband, Charlie, eight years ago, Dominique was quickly introduced to the world of cystic fibrosis — nebulizers, vests, and all.
“Charlie has always focused on simply living each day to the fullest. Seeing his commitment to looking for the good in every day — despite the physical toll of the disease — is what motivates me to be involved in this community.”
Inspired by Charlie and eager to make a difference, Dominique connected with her local Greater New York Chapter and jumped in headfirst — from joining the Future Leaders Council to participating in the chapter’s Finest program. Today, she also serves as vice chair of her chapter’s Tomorrow’s Leaders program.
“After seeing how scientific advancements funded by the Foundation directly transformed my husband’s health and life, I knew I wanted to do more than just be a supportive spouse.”
Dominique shares her and Charlie’s story to shine a light on the many invisible burdens people with CF still face every day — even with breakthrough medications like Trikafta. By being open, she hopes others will feel less alone.
Her message to anyone considering getting involved:
“Don't wait to feel like an ‘expert’ on the disease to start participating. Eight years ago, I didn't even know what CF was. It is perfectly OK if you don’t know exactly how you want to support yet; the Foundation welcomes everyone and truly helps you find your path. There are so many ways to give back — whether through fundraising, awareness, or advocacy — and I promise you, you’ll find a friend in this group!”
