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.
While I would have never asked for cystic fibrosis to enter my life, there is not a single day that goes by that I do not thank my lucky stars that I have the Foundation on my side.
October 15, 2015
Meet Stacy Motenko
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Luck is not usually a word that comes to mind when I think about cystic fibrosis. However, with each and every passing year my son has lived with this disease, I have gained an enormous amount of appreciation for this community to which I now belong, and the extraordinary work we are accomplishing together. While I would have never asked for CF to enter my life, there is not a single day that goes by that I do not thank my lucky stars that I have the Cystic Fibrosis Foundation on my side.
I once read an article in which a pediatric nurse compared living with cystic fibrosis to the story of David and Goliath. She described children, like my son, with their arms raised, stones in hand, shivering in the shadow of this enormous disease. However, what this article fails to mention is that our children are not alone in their battle. They do not have to march up to their enemy all by themselves. If you step back and examine the reality of the situation, you will see that standing behind the 30,000 individuals living with this disease is the entire CF community. And in each of our hands, we also have a stone. And we are definitely not afraid to throw them as hard, and as far, as we can until a cure is found.
I shared this during my opening remarks to an audience of volunteer leaders at the Volunteer Engagement Conference (VEC) in Phoenix. As the co-chair of the event, I was asked to share my thoughts on cystic fibrosis within the framework of the conference's theme of community and collaboration.
Volunteering in our hometowns or sitting at a table in the middle of an enormous conference room, we may feel as though we are gravely out-numbered at times, wishing we could do more. What we need to remember is that we are not alone and we don't have to necessarily have to work harder; we just need to keep on working together.
While there is still a lot to be done, through our joint efforts, we are definitely standing on the brink of a new era. For the first time in our history, there are more adults living with this disease than children.
Several of the videos introduced throughout VEC featured CF adults with grey hairs, laugh lines and even reading glasses. We are literally changing the face of this disease.
To further prove this point, the adult panel showcased an extraordinary story of one couple who continues to defy expectations and beat the odds.
I was so moved by the story of Sara Dun, who was diagnosed with CF at the age of 2, and was not expected to live past the age of 10. She is now a wife, double lung transplant recipient and (most recently) a mother. Her husband, Michael, has remained a positive and steadfast force in her life. Sitting side by side on the stage, the two described navigating through some of life's biggest challenges together. Sara and Michael personified collaboration. While their sense of teamwork is on a smaller scale than the entire workforce of the CF Foundation, the principles behind it remain the same.
As Sara held her son in her arms, she credited her life to the people around her. She thanked her husband, family, friends, medical team and, of course, the CF Foundation: the collaborative efforts of her community. And she eloquently expressed the anthem of this amazing community to which we all belong: “Working together, we can exceed every predicted expectation.”
I couldn't have agreed more. And once again, I felt extremely lucky.
Mother of a teen with CF
Katrina is a mother of three living in San Diego, Calif. Her oldest son Sean was diagnosed with cystic fibrosis just four days before his second birthday. Together with Sean, Katrina gives speeches at CF Foundation fundraisers, and local biotech firms and pharmaceutical companies about the importance of CF medical research and the impact it makes on families living with chronic diseases. She serves on the Board of Directors for the San Diego Chapter of the CF Foundation and co-chairs the Moonlight Beach Great Strides Walk. She and her husband Robert have committed themselves to keep walking until they find a cure for their son, as well as the 30,000 other sons and daughters living with this disease.
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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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