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.
Although I had heard of cystic fibrosis, I never knew anything about the disease until a chance meeting with a member of the CF community during a networking event. Since then, I have provided donations to CF events and am in awe of the determination and attitude that people with CF have about life.
July 15, 2021
How Going on Disability Led Me to Join the CF Community
Acknowledging My Trauma Has Made Me a Better Advocate
Several years ago, I was invited to participate in an extraordinary networking event, “Train on the Train.” The event was sponsored by the new “Virgin BrightLine Train” system that ran from West Palm Beach to Fort Lauderdale, Fla.
I was excited to experience this new traffic-free version of transportation that included a networking experience with 50 like-minded individuals. Little did I know that I would make a connection that truly inspired me.
This is where I met Colette Beland. Prior to meeting her I did not know much about cystic fibrosis. Truth be told, I knew the words, but really did not understand the disease or the impact that the families and supporters have had in finding and funding
research to help find a cure or to improve the longevity of people with CF.
Thanks to Colette, I have a better understanding of the disease. During our conversation, she shared the amazing story of Mary Weiss and her three sons who were all born with CF. She shared the story behind “65 Roses.”
The story of Mary and her son Richard really resonated with me -- first, because of her determination to help her children and raise awareness, and second, because of the “roses.” Third, because I know, firsthand, what it feels like to know you might
die at an early age.
When I was a younger man, I lived my life with a philosophy of, “What's in it for me?” I thought I was invincible. I was in great shape, a student of the martial arts for nine years, and a state champion racquetball player. I had good friends and a great
job teaching at the University of Florida. I was on top of the world.
That all changed with one sentence … “You need to get your affairs in order, you have three months, six -- at the most -- to live.”
I sat across the desk from my oncologist as he spoke these words that shook my world, my very core. I thought he must be talking about somebody else. This couldn't be happening to me. I am too young (25 at the time); I am in great shape … it can't be
I saw the heartache and -- at the same time -- the strength of family and friends who supported me. Despite my dire cancer prognosis, I survived and am cancer free.
When you are facing the news that you are going to die from a disease, you have a choice. You can give up and give in to the disease, or you can choose to make the most out of every moment of every day and celebrate and be grateful for all that you do
Those who are living with CF and all the families who are dealing with this disease are true champions and angels.
After hearing about cystic fibrosis and the story about 65 Roses®, I told Colette that many years ago my partners and I were the largest rose growers in the world and that I still have many connections with rose growers.
BAM! Talk about serendipity.
Since that train ride, my friendship with Colette and the CF community has grown. My wife and I attended the “Rock the Roses” event in West Palm Beach. We were impressed by the families we met, and the sponsors who donated. We were in awe of the people
who had CF and their determination and attitude about life.
Including that event, we gladly donated thousands of roses to support CF families and sponsors in appreciation for all that they give.
I have always believed that true abundance is not measured by what you have … rather, it is measured by what you give. An amazing thing happens when you give -- you both win.
The real tragedy is not dying at a young age. The tragedy is making it to 70, 80, or 100, but never truly having lived. I live my life with the following mantra: Every day is a gift, and the quality of your life is your gift to yourself.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Barry's mission is to inspire and empower others to reach their full potential. He began his career first as a teacher, then a school principal, and finally as an instructor at Santa Fe Community College and the University of Florida. During this time, he was diagnosed with terminal cancer and was given three to six months to live. His story of recovery was the inspiration for his first book and change in his lifestyle and career shift to business. Today Barry is an author, speaker, and empowers individuals and companies to reach their full potential.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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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