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 cystic fibrosis community is a pretty spectacular bunch, whether you are living with this disease or helping to raise awareness and funds every day to fight for a cure. I'm excited to highlight a small sampling of the remarkable things you are doing in support of people with CF.
September 28, 2017
Pulmonary Function Tests Blow
Why Being a Mom of 2 Kids With CF Sometimes Means Watching Your Attitude
As a member of the Communications team at the CF Foundation, I am privileged to hear incredible stories of people across the CF community who fight for a cure, any way they can. Any efforts to tell more people about cystic fibrosis and its impact are
especially important. More awareness means more support for the research and development being done in this field.
Periodically, we'll be highlighting some of your work here on the blog to help spread the word about all that you do to support the CF community.
If you have a CF-related project you'd like us to include in a future roundup, shoot us an email at firstname.lastname@example.org.
Donna CodellAuthor, There Are No Alligators in Heaven
My daughter, Jennifer, passed away on Dec. 5, 2015, one month before her 44th birthday -- waiting for a double lung transplant that she never received. She lived in Florida with her husband for her last 5 years. When she passed, I knew that I wanted to
write a book about her and share with the world the amazing example she set for how to live life fully in spite of the unrelenting savagery of CF. She always had a smile on her face no matter how she felt. She was such a positive, courageous, selfless,
loving, happy child and woman who was taken too soon.
My husband and I wanted to write this book, There Are No Alligators in Heaven, and add Jennifer's writings from the CF Roundtable to inspire others who are struggling with CF, or any health issue, to never give up. She was such a help to my husband
when he was diagnosed with stage IV lung cancer in 2012. Unfortunately, he passed away in December 2016, so he never saw the published book.
There Are No Alligators in Heaven is available for purchase on Amazon.
Nicholas FerracamoFilmmaker, The Gift of 65 Roses
The Gift of 65 Roses follows the story of Rich, a man in his early 30s who made all the “right” choices in life but can't find contentment. Rich's brother Joe, who has cystic fibrosis, chose following his passions over making all the right choices,
but he, too, questions whether that is the right way to live. As they deal with family, friends, relationships, and the physical and emotional ailments that go along with CF, life's purpose starts to become less and less clear for both brothers --
until Joe is ultimately faced with a life-and-death decision.
The film is about finding the truth within yourself and finding a life that you want to live. In the end, there is no right or wrong. There's no playbook for this life.
The Gift of 65 Roses is in the beginning stages of production, but you can watch the trailer. If you would like to get involved, feel free to contact Nick through Facebook (and be sure to like the page).
Author, Lessons from a CF Cornerman: 38 Lessons I Learned from My Wife’s Illness and Lung Transplant
With overwhelmingly positive reviews, Lessons from a CF Cornerman tells an inspiring story from a husband's perspective. On New Year's Eve 2014, 37 years into her struggle with cystic fibrosis, Rebecca Poole went into respiratory failure and
was placed on life support in a medically induced coma. The doctors gave her days to live, but she would take much more than that.
The struggle to stay positive and move forward in the face of impossible odds comes across in this incredibly honest portrayal of the ups and downs of a major illness. My lessons relate to relationship conflicts, personal motivation, and overwhelming
obstacles. The serious subject matter is offset by my humor and wit, as this self-proclaimed expert on "holding her pocketbook like a man" takes you through an incredibly tough experience and what I learned from it.
The book was written to help people living with health issues and their family members navigate the ever-changing challenges of a progressive disease, while telling an inspiring story and making a case for realistic optimism.
Lessons from a CF Cornerman is available for purchase on Amazon.
Beth VrabelAuthor, Caleb and Kit
Caleb and Kit is a book about what happens when friends realize they have to grow apart, just as two trees sometimes have to bend away to share sunlight. The main character, Caleb, happens to have cystic fibrosis. Why? Because 30,000 Americans do. The
book is not about CF, but the disease affects Caleb's relationships and experiences.
As the mother of a child living with a different disability, I knew how damaging a false portrayal of this story would be. So, I researched. And researched. I learned a lot of facts, but I still didn't know Caleb.
I reached out to the CF community and was blessed to hear back from several people willing to share insight into their rich, vibrant lives, of which CF is just a part, not the centerpiece. These friends include Will, an award-winning filmmaker; Jack,
a young soccer player and brother; and Joey, a pint-sized fighter taking on the second grade. Suddenly, Caleb was real to me, and I didn't want him to be facing these treatments, this prognosis, or the pain of cystic fibrosis any more than I wanted
it for my new friends. And that's when it became all the more important to include CF truthfully and authentically in the book.
My prayer now is that Caleb and Kit will be moved to the historical fiction section of the library because a cure
has been discovered. Until then, I remind myself what I tell my children: everybody has a story. Everyone faces challenges. But your story is so much greater than your challenge.
Caleb and Kit is available for purchase on Amazon.
Digital Project Manager, CF Foundation
Lindsay is a digital project manager for the Cystic Fibrosis Foundation, overseeing the strategy and execution of initiatives such as the first-ever BreatheCon, as well as leading ongoing enhancements of CFF.org. Currently, she is also a master’s candidate in social enterprise at American University’s School of International Service, studying business and innovation methods to create change and opportunity within purpose-driven organizations.
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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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