Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
There are many people in the cystic fibrosis community whom I believe possess hero-like qualities that I admire and who inspire me in my everyday life. I feel so fortunate for having crossed paths with them, and I very much look forward to meeting many more in this journey that I call life.
April 6, 2016
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Recently I was asked who my heroes are and why. After thinking about it for a while, I concluded that a hero, to me, isn't necessarily a particularly well-known person admired by many. Rather, I am inspired by everyday people who hold certain hero-like qualities. These are people who are brave, tireless and committed to living the best life that they can: People who find their lives' passion and never, ever give up on their dreams until they succeed. These are the attributes that I admire most in people. And in the cystic fibrosis community, we have no shortage of people whom I would consider to be heroes.
As a former pole vaulter, I liken my view of how someone becomes hero-like to how someone prepares for a pole jump. While the act may appear simple, it requires countless hours of weight training, running, gymnastics and focus. As the bar is raised higher and higher, a pole vaulter can't quit or feel less determined with an unsuccessful jump. It's about getting up from the mat, shifting focus and preparing yourself to make the higher jump next time. I find that heroes are similar. There's so much more to them than what the eye sees.
Growing up, I never let CF dictate my life and that was very much because of the mental and physical foundation I had built with the help of some of my heroes along the way. I can emphatically say that my parents, who laid the groundwork for this foundation, were a huge influence in my life. I was a kid from Brooklyn, one of six, so I wasn't coddled every time I fell down. Instead, I was told to get back up and reset the compass if needed. My parents were also the ones who embedded the “you cannot fail” mantra into my head. Whether I was going to live one or 100 years, my parents led by example and showed me how to be relentless and resilient in all situations. Solutions replaced complaints, and this hero-like approach helped me to take on the world.
In high school, I met Al Berardi, who became my pole vaulting coach, mentor and one of the first hero-like people that I had encountered outside of my family. He knew that I possessed the skills to be a great pole vaulter, but I wasn't there yet. He taught me that with hard work, focus and dedication, I could become the best. He was relentless in spirit and conviction and someone that I very much admired.
In my forties, during a chance meeting with former NFL MVP Boomer Esiason, whose son has cystic fibrosis, I found someone as equally passionate about life and finding a cure for CF as I am. Inspired by Boomer's infectious and upbeat “can-do” attitude, I started volunteering for his Foundation shortly after we met. Suddenly, I went from not sharing my diagnosis with anyone to sharing it with everyone. This paved the way for me to meet many hero-like people within the CF community.
While there isn't enough room here to name them all, there are two stand-out individuals who have inspired me to strive for the extraordinary in the ordinary of everyday life: Emily Schaller and my friend Kay, who I like to call a “quiet hero.” Both of these women have shown a commitment to bettering themselves so that they can live their best lives every day.
Through Emily's humor and relentlessness, she inspires me, and many others, to transform their lives through exercise, diet and goal setting. And Kay, while compliant with her treatments, pushes the envelope and tries things that she believes will work well for her body. I'm constantly inspired by her “I won't give up” hero-like attitude, and her refusal to allow CF to define her life.
Again, there are many more people who I admire and who inspire me in my everyday life, many of whom may consider themselves to be “average,” but I think they're far from it. For me, being a hero is about being relentless, a fighter and never giving up. I feel so fortunate for having crossed paths with so many of these heroes, and I very much look forward to meeting many more in this journey that I call life.
Who are your heroes?
Adult with CF
Jerry was diagnosed with cystic fibrosis in 1967 at the age of 11. Currently a CF Ambassador at the Boomer Esiason Foundation (BEF), Jerry leads its scholarship and grants division and is the founder of Team Boomer -- the athletic arm of BEF dedicated to encouraging exercise among CF patients while simultaneously raising money for scholarships. He has also started the program You Cannot Fail, which includes apparel, a website, an autobiographical coffee table book, and two children’s books. On top of all of this, he records educational podcasts and videos and encourages other people with CF to share their stories on Club CF. He has completed two 500-mile “Bike to Breathe” bike tours. Jerry believes that exercise is the single most important thing in his life that keeps him healthy with CF. Follow Jerry on Jerry Cahill's Cystic Fibrosis Podcast.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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