Cystic Fibrosis
Understanding Cystic Fibrosis and Its Impact
Cystic Fibrosis (CF) is a genetic disorder that primarily affects the respiratory and digestive systems, leading to thick, sticky mucus buildup in the lungs, pancreas, and other organs. This condition causes persistent lung infections, difficulty breathing, and problems with nutrient absorption, making daily life a constant challenge for those diagnosed. While there is no cure, advances in medical research and treatment options have significantly improved the quality of life and life expectancy for CF patients.
The condition is caused by a mutation in the CFTR (Cystic Fibrosis Transmembrane Conductance Regulator) gene, which affects the movement of salt and water in and out of cells. This leads to thick mucus production that clogs airways and traps bacteria, causing frequent lung infections. Over time, these infections can lead to severe lung damage and respiratory failure. Additionally, the pancreas is affected, preventing digestive enzymes from reaching the intestines and making it difficult for the body to absorb nutrients properly. Many CF patients require specialized treatments, including daily airway clearance techniques, enzyme supplements, and medications that target the underlying genetic mutation.
The Growth of the Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation (CFF) has played a pivotal role in advancing CF research, treatment, and advocacy. Since its founding in 1955, the organization has led the charge in improving the lives of individuals with CF through groundbreaking research and medical advancements. In the early years, CF was considered a terminal childhood disease, with few patients surviving beyond adolescence. However, thanks to the efforts of CFF, life expectancy for those with CF has steadily increased, with many individuals now living well into adulthood.
One of the foundation’s most significant contributions has been funding research that led to the development of CFTR modulators—medications designed to improve the function of the faulty CFTR protein. These drugs have transformed the treatment landscape for many CF patients, helping them breathe easier and live healthier lives. Additionally, the foundation continues to support clinical trials, advocate for policy changes, and provide resources for individuals and families affected by CF.
Through fundraising initiatives such as Great Strides, CF Climb, and other community events, the foundation has raised millions of dollars to further research and provide patient support. These efforts have paved the way for continued advancements, offering hope for a future where CF is no longer a life-threatening condition.
Our Personal Connection to Cystic Fibrosis
Victory Plumbing's Youngest Team Member - Reagan
It was through Reagan’s newborn screening that we first learned she was born with Cystic Fibrosis. At the time, Levi and I had no understanding of what CF was or how we were going to navigate this new reality. Neither of our families had any experience with this diagnosis, and it left us feeling lost and uncertain. But in the midst of the overwhelming news, we were quickly introduced to the incredible CF Foundation and the compassionate CF team at Phoenix Children's Hospital. They became our guiding lights, providing Reagan with the medications she needed to alleviate her hunger pains, uncontrolled stools, vitamin deficiencies, and helping to start therapies that would keep her lungs clear.
Levi and I learned how to perform chest physical therapy on an infant, gently tapping Reagan’s chest with a rubber piece, a technique that’s become part of our daily routine. While most babies don’t have their first taste of food until around six months old, Reagan was swallowing applesauce and enzymes like a pro by just twelve days old.
I’ll never forget the day we received the call with her diagnosis. We were flooded with questions—how would her life unfold? Should we consider relocating closer to the hospital? But thanks to the CF Foundation, doctors, and the remarkable partnerships they’ve built, the answers to those questions became clearer over time.
Reagan's life is beautiful. We live where our family feels happiest and most at home. She has the opportunity to live a life that’s as normal as possible, with only a few extra steps along the way.
Because of the support of the CF Foundation, Reagan has access to all the medical care she needs—no barriers. She’s part of a community that understands her, a community that’s filled with hope, and no matter what, it’s always there for her. She’s able to run and play with her sisters without limits, she gets to complain about doing her therapies (like any kid would), and she has the tools to thrive—thanks to the advancements in research, medicine, and therapies that give us the chance to live this full, joyful life together.
Most importantly, the CF Foundation shares a mission that we hold in our hearts every single day—a cure. We are endlessly grateful for all the support, love, and hope you all provide for families like ours, facing Cystic Fibrosis with courage and faith.
Thank you for supporting the CF Foundation, a lifeline for Reagan and so many others. Your generosity truly makes a world of difference.
We invite you to take part in Great Strides by joining our team. We promise, you belong here! This event promises to be a fun-filled day where you can help advance the care and research needed to cure cystic fibrosis. By walking with us, you’ll enjoy not only the natural camaraderie (yes, lots of laughter!), but the important impact we are making together. In the case you are not able to attend, please consider donating to our team and help us reach our goal!
While the CF Foundation has made incredible progress, not everyone with CF can benefit from existing therapies and we still need a cure. This will require time, funding, and persistence – but with you on our team – we are ready to go the distance.
Our team is committed to providing every person with CF the opportunity to live a long, healthy life. Will you join us?"
#Strong4Reagan - Prescott Great Strides
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