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.
I kept at riding because every time my lungs would get tight, I thought of people with CF who would give anything to be out of breath just because they were riding up a hill.
August 17, 2016
The Question to Ask Yourself When Considering a Clinical Trial
Leaving a Legacy of More Tomorrows
Most of us learn how to ride a bike when we are young. As a kid it was the sole source of transportation. We rode to school, to the park, to our friends' house and sometimes, we just rode. I did that until I was severely injured at 15 years old. I never rode a bike again, until the age of 54. What motivated me to ride at 54? The Foundation's
CF Cycle for Life.
When a family member was
diagnosed with cystic fibrosis, I got involved with my local chapter and wanted to participate in a
fundraising event. My children were away at school and I no longer had to run around the country attending soccer or wrestling matches. My time was my own again, and getting back into shape had become a goal of mine. When I learned about CF Cycle for Life, I felt too old and too scared to ride again. But despite my nerves, I was off to ride.
I remember my first training ride like it was yesterday: 4 miles and I was out of breath and could barely move. But, I kept at it because every time my lungs would get tight, I would think of all the people with CF who would give anything to be out of breath just because they were riding up a hill.
I would think of how many people with CF were out of breath when they simply walked up a flight of stairs. My shortness of breath was nothing in comparison.
I used my inspiration and set my goal: to complete the 30-mile CF Cycle ride in November. This was a significant challenge for me, a non-athlete. I began training in July, and I rode every weekend and once during the week. The entire time, I had people with CF on my mind.
After four months of riding and training, it was finally time to participate in CF Cycle, the first organized ride of my life. I was one of 165 riders at the event. Most of the people knew very little about this rare disease. They were there to ride. I remember telling my wife that I was nervous that day and not sure if I would finish my 30-mile goal.
There was one little girl with CF at the event giving out little blue ribbons that said “BREATHE.” I took the ribbon and tied it to my bicycle bag, where it remains today. Throughout my first ride, I thought about that little girl and the blue ribbon and how what I was doing might be helping her live longer and easier. Each time I go to ride, I look at the ribbon and think of all those with CF and how the disease affects their lives.
That little blue ribbon, such a simple thing, added to my motivation to ride for the CF cause.
I made it all 30 miles that day -- yes, 30 miles. That ride, and doing something for people with CF by supporting the Foundation, touched me like no other cause has before. Maybe it was the fact that I was 54 and in growing older, I felt a desire to help people; maybe it was my family member and how I was doing something to help find a cure for the horrible disease they have; or maybe it was simply meeting my goal of riding 30 miles that day. I still can't pinpoint the reason why I participated so wholeheartedly, but it certainly motivated me to do more.
Going home that day, I thought about what else I could do. I knew that one of the biggest ways I could help was to raise more funds to advance the search for a cure for CF. So, I formed the first national CF Cycle for Life cycling team in the country. This national team, the “Matt Pack,” has participated in 11 CF Cycle for Life events from coast to coast. We've raised over $40,000 for CF.
Our team has become a great motivator for people to get in shape and make new friends. Most of these people never knew what CF was and never knew anyone with the disease. Today, I'm proud to say that these are my friends, who support the “Matt Pack” and CF Cycle for Life in many ways: They ride, donate money, and provide support services, and they are the ones who help make the “Matt Pack” strong. CF Cycle for Life has become my yearly riding goal. I train a minimum of 80 miles a week and will participate in 6 metric centuries (62-mile rides) this year. I rode over 2,000 miles last year and will complete 3,000 this year. All this because of a little blue ribbon on my cycle bag saying “BREATHE.” All this for the 30,000 people who have CF, a disease that we will someday beat.
I encourage you to do the same as I have done. Get involved, make a difference, and join in to help find a cure for CF. You can even join the “Matt Pack” and become one of our team members and one of my new friends.
Family member of an adult with CF
Larry, a family member of an adult with CF, was so inspired by the Cystic Fibrosis Foundation’s CF Cycle for Life that he formed the first national cycle team. See highlights from Larry’s team, the “Matt Pack,” on Flipgram.
Share this Post
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.
Follow Us On
With more than 70 chapters and offices across the country, it’s easy to find and join a local Cystic Fibrosis Foundation chapter near you.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails