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.
My daughter loves looking up at the stars, which is perfect because we plan on teaching her to reach for those stars in every moment of her life and not settle for anything less.
December 21, 2015
The Heart of Science
Mara Goes to Washington
Our lives are filled with many singular moments. There are moments of happiness, joy, sadness and fear; and some of these moments will forever stay with you. In December 2011, our lives were changed forever when our precious daughter, Peyton, was diagnosed with cystic fibrosis.
I vividly remember getting the call -- while Christmas shopping with Peyton -- letting me know that something was abnormal on her newborn screening. I immediately knew. Afterwards, I don't think I put her down for at least a week. She was my baby; how could this be happening? She was our firstborn and we were still trying to navigate being new parents, let alone being new parents to a child with a genetic, life-threatening disease. I am also a nurse, so I immediately assumed the worst possible scenarios.
At every doctor's appointment, I felt physically ill with all the questions racing through my mind. What are they going to say? Has she gained enough weight? Is her respiratory culture going to come back clear? Are we doing everything the correct way? Am I always going to cry at every single blood draw? Does her CF care team think we are doing a good job of taking care of her? For months we coped, but it probably took a solid year for us to really thrive emotionally. We relied on our faith to pull us through, and we realized that we could do this. We could take care of her and teach her that everyone lives life differently, and this was just going to be her way of life.
Two years later, I decided I wanted to do more. Not just for our baby, but for others whose children are affected by CF. But how could I do more? We had been involved in fundraising efforts such as Great Strides, but there had to be more that I could do.
I wanted to reach for the stars and beyond. That's when I realized that I could use my profession. So, I became a CF research nurse in January 2014 and have never looked back.
Every single day, I get the privilege of working towards finding a cure for this disease. Not just for my baby, but for everyone living with CF. Lyrics to a song come to mind, “Why sit around and wait for a miracle to come, when you can be one?”
At first, my family was unsure of how I would cope in this new role, and there were days I was also unsure of my own coping abilities. But today, I am stronger than I have ever been in my life, and the work that I do is extremely gratifying. I am glad that I pushed myself so that I could do more. I know that for all of those affected by this disease, there is so much to look forward to.
Peyton is now turning 4 and is, of course, one of our greatest blessings in life. Incidentally, one thing that she can't get enough of is the stars. Every time we are outside, she points at them with such excitement and says, “There are the stars, mommy!” We plan to teach her to reach for those stars in every moment of her life. I will raise her to settle for nothing less. Our family will also continue to reach for the stars until a cure is found, and beyond.
Mother of a child with CF
Emily is a wife to her husband and a mother to two children, Peyton and Brody. Peyton was diagnosed with CF shortly after her birth in November 2011. Emily is a graduate of the University of Cincinnati with her bachelor’s degree in nursing. She is currently working at Cincinnati Children’s Hospital as a CF research nurse. When she isn’t working towards a cure, Emily is actively involved in her community through her local church, where her husband is the pastor.
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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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