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.
The initial sadness we felt when learning that our son had cystic fibrosis quickly gave way to our determination -- as a family -- to react in a productive way.
Michael J. Woods, Esq.
December 21, 2017
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Our son, Tobin, is a fun-loving 4-year-old boy. He loves Star Wars and Transformers. He loves to play with his 7-year-old sister, Ainsley, and makes us all laugh. Tobin also has cystic fibrosis.
Tobin's diagnosis was a shock to my wife, Missy, and me, and it reminded us just how much of life is beyond our control. We quickly had to process a range of emotions when we learned about Tobin's CF: sadness, uncertainty, and fear of what was to come.
We are not doctors or researchers, and we can't cure CF alone. We focused on what we could control. We started to learn all we could about the disease, to connect with other families living with CF, and to become involved in our local Cystic Fibrosis Foundation chapter.
Today, we have high hopes for both our children. Ainsley is a gifted speaker, and she can already discuss CF in depth to anyone who will listen. We expect that she'll be a powerhouse when she meets members of Congress at a future Teen Advocacy Day. We like to say that she was born to be a big sister. She cares for -- and is very protective of -- her baby brother. But, she also has her own life and interests, and we can't lose sight of that. We don't want to deny her anything as we seek to keep Tobin healthy and strong.
Tobin goes to school full time and enjoys learning and playing with his friends. He has a sly sense of humor and a loving heart. Tobin lives the life of any other little boy, with a few added-on obligations. He is diligent about hand-washing during cold and flu season. We help him take charge of his daily treatments. He counts his enzymes at every meal and straps on his vest by himself. He does this every morning and every night.
The progress in research and drug development that is being made by the Foundation is encouraging, especially as we think about Tobin's future. He has two copies of the most common CF mutation, which means that he'll be able to take Orkambi® when he is old enough. We are hopeful that by staying on top of his treatments and with the help of Orkambi, Tobin will be able to maintain his health and have a long, productive life.
Of course, this disease is unpredictable so when our son is having a great day, we really appreciate it. And, we take heart in the fact that because of ongoing medical advancements, the CF population is getting older and more than half of people with CF are older than 18. CF is a bad disease, but -- all things considered -- I'd rather deal with this challenge now than at any other point in history. We consider ourselves fortunate.
Before cystic fibrosis became a part our lives, our family was active in local charities, raising money to assist other people in need. Suddenly we found that we were the ones who needed help. At first, asking for this help was uncomfortable. But, I reminded myself that, if I can't fix this for Tobin, I'll do everything I can to help those that can. I'm not a doctor or a researcher. I can't cure CF. As much as I want to, I can't give my son, Tobin, that gift right now. But, with your help, someday, I believe that somebody will.
Michael J. Woods, Esq.
Father of child with CF
Michael and his wife, Melissa, are the proud parents of daughter, Ainsley, 7, and son, Tobin, a happy 4-year-old who was born with cystic fibrosis. Michael and Melissa met at the University of Florida, and Michael stuck around to attend the University of Florida Levin College of Law. The whole family is active with the Central Florida Chapter of the Cystic Fibrosis Foundation, focusing on Great Strides, Cycle for Life, March on the Hill, and the Volunteer Leadership Conference. They live in DeLand, Fla., and Tobin and Ainsley try to go to the beach any weekend they can.
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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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