Faith “Fizzy” Clark’s doctor told her CF was a “disease that only white children get.” Her boy was 7 weeks old and weighed less than 6 pounds. All his test results came back positive for CF.

Today Faith’s son, Felton, is 4. Faith wants to be a voice and advocate for Felton and other people with CF. She wants people to know that this… Read more

Sicily Russo is 15, and was diagnosed with cystic fibrosis when she was 9 months old. Since she was little, she felt different from others around her. Growing up the one thing she could count on to be her outlet was music. It sparks so much joy in Sicily and motivates her to power through any rough patches.

She started writing songs with… Read more

Growing up, Rachel Reschke was compliant with her CF regimen but there was one thing she despised: exercise. Yet eventually, she found her desire to grow and to learn how to dance! Rachel soon found her body becoming stronger, and the number of times she was hospitalized decreased significantly.

Fast forward, and Rachel is a personal… Read more

Jessica Torres taks about her son Bautista. CF entered their lives without permission, on Oct. 7, 2021, as a doctor told Jessica that Bautista had CF (he was three). The doctor also said that CF is not what it used to be, that Bautista would be fine.

That same week the team caring for Bautista explained everything better: central… Read more

Shannah Weller’s sister, Jana, passed away on January 20, 2019. Jana inspired many, both healthy and those facing their own health challenges, to live like she did. Eight years older than Shannah, she imparted so much wisdom to her and her siblings.

Shannah decided to become an advocate for cystic fibrosis, as a mechanism to not only… Read more

Katie Lockwood’ grew up surrounded by love. Having said that, life with CF was challenging too. Treatments and her medicine regimen were a constant push and pull for Katie and her family.

“They say different children need different things.”

Now that Katie has become a mother, to Rose and Magnolia, she can appreciate what makes each of them… Read more

Paul Jordaans was born with CF, in 1963. He soon began concentrating on being here now. Meditation — cleaning his lungs twice a day with a nebulizer is great pranayama — taught him to be in this flow almost continuously, trying to ignore the periods of suffering when his “ego/mind” had a temporal hold over him.

“This is a peaceful way of… Read more

Ashley Wilson never looked at life knowing what the “expiration date” was, as some refer to it. She has always known that no one is guaranteed a tomorrow, although medical advancements that are continuing to be made available, such as Trikafta (elexacaftor, tezacaftor, and ivacaftor), have changed her life.

Ashley believes she wouldn’t be… Read more

Maggie Ronayne is 26 years old and is from Southeast Michigan.

Maggie believes that having an invisible illness like cystic fibrosis is a bit of a crazy thing, because one day she’s having a great time with friends, and the next she could be in the ICU fighting for her life.

Trikafta (elexacaftor, tezacaftor, and ivacaftor) was truly a… Read more

Elizabeth Knight lives with cystic fibrosis and seizures. Although she’s always had CF, she began having seizures after a car accident and subsequent head injury in January 2019. No amount of medications or tests helped.

Eventually an idea popped into Elizabeth’s head. She did a ton of research and talked about it with her CF doctor. He… Read more

Katie Osborn is an actor and cystic fibrosis warrior living out her dreams in NYC.

Just like cystic fibrosis is in her DNA, being an actor was written on her soul, and accepting her body and breath with CF allows Katie to freely give as an actor. She has fully integrated the lessons of CF with professional theater training. This has given her… Read more

For Ana Allen, living with cystic fibrosis was something she felt embarrassed of in grade school because of its complications — stomach issues, coughing blood, nasty cough, etc. She would always try to cover it up, only telling her closest friends.

Then she met Brady in law school. They studied together, lived in the same apartment complex ,… Read more

McKenna Pozsgai is 22 years old and the sister of two brothers: Matthew, a CF warrior and Adam, her twin. Throughout Matt’s journey with cystic fibrosis, McKenna has become one of his biggest advocates. She supports him by being present in his fight, and doing everything in her power to spread awareness and help find a cure for CF.

She also… Read more

KC White’ feels she is alive today because of the generosity of others.

When KC was diagnosed in the early 1980s, CF was a disease of little hope, but because of advances in research during her lifetime, she is now a wife, mom, graduate student, and coach. KC is also about to embark on a new adventure as chair of the Cystic Fibrosis… Read more

Heather McCoy’s was diagnosed with cystic fibrosis at 7 weeks old on June 3, 1992. Growing up, she wanted to meet someone she could relate to. When she began going through her transplant phase, age 20, Heather started meeting more CF friends online, and finally felt surrounded by people who truly understood her. That is how Heather met some of… Read more

Amanda Biederman was diagnosed with CF when she was 4 years old. She is now 32. After graduating college and working as an oncology nurse, CF progressed quickly. At 28, Amanda found herself in end-stage lung disease, her job,  independence, plans, all seemed like they were being stripped away from her.

On Jan. 2, 2019, Amanda received… Read more

Sumaiya Shahid’ lives in Pakistan. For Sumaiya, being a CFer and living in Pakistan has been very difficult and heartbreaking. Families don’t know about the condition, doctors are not CF trained, and treatment costs are not affordable.

But her faith and determination to defeat the disease have helped her a lot. She has been blessed recently… Read more

Shannon Miller has cystic fibrosis and is married to Jason. CF and relationships are not always easy. But Shannon feels blessed to have a husband who is very supportive.

When Shannon was evaluated for a cystic fibrosis-related lung transplant in 2016 Jason was incredibly helpful. They had the toughest discussions, which is something Shannon… Read more

Kristy Ann O’Connell has what she labels as a “weird” relationship. She’s been on modulators since 2012, and since then, slowly healed and detached herself from all of the adversity that comes with cystic fibrosis, but it’s tricky to fully let go. Kristy sets most of the pain free and aims to turn it into an energy that drives her focus towards… Read more

Camille Richards was diagnosed with cystic fibrosis (CF) seven years ago at the age of 19. Since then, she has gone through the grieving process many times.

Someone once told Camille that all pain is valid no matter how big or small. By validating and allowing the losses to be there without judgment, Camille is able to see and appreciate… Read more

Lauren Michele is a 23-year-old cystic fibrosis (CF) patient from Dallas. She was diagnosed at 5 months old, and for Lauren that means her CF is like a family member. In fact, she goes by the name Cynthia Fibrosis.

Lauren and Cynthia Fibrosis have had a lifetime of memories together: hospitalizations, infections, a G-tube, surgeries, and… Read more

Joanie Santander noticed how everyone around her was having  a “Trikafta baby,” and she felt left out. Trikafta didn’t seem to be the key in her fertility journey.

In fact, it took  a lot more than just Trikafta for Joanie to get pregnant: five years and countless shots, an endometriosis surgery, a hysterosalpingography (an X-ray test of the… Read more

Jenny Humphries has always been a planner. She even had a plan growing up: college, hopefully motherhood, and after that it got a bit nebulous, as she believed she had an early expiration date. In her 20s, that “median life expectancy” started to loom large.

As any good planner would do, Jenny began watching videos and reading stories about… Read more

For 34 years Stephanie Stavros’ kept hear health struggle a secret. No one outside her direct family and a few friends knew that she was born with CF. For decades, one of her greatest fears was the everyone would find out.

Stephanie thought that if she controlled the dialogue about her health, she would control the outcome. But with time,… Read more

This is Cheyenne and Winry Sowder’s story:

In 2016, at just 21 days old, Cheyenne’s daughter, Winry, was diagnosed with cystic fibrosis. Soon after Winry’s diagnosis Cheyenne realized that she needed to be able to plan, schedule, and track everything continuously. But also, to go with the flow and accept last-minute changes. Things are… Read more