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 husband and I had always seen ourselves raising our family in a small western town. But after our daughter Annie was born and diagnosed with cystic fibrosis, we realized that we might have to let go of the rural life that we had imagined.
April 21, 2016
Learning and Leadership Collaboratives: Improving CF Care Together
Introducing Impact Grants for Your CF Community Project
Ah spring! The season of awakening. The feeling of hope filling the air. After a long winter, it is so amazing to see everything coming alive. For me, spring is the perfect time for reflection. A perfect opportunity to reflect on where I have been and I where am going: a process that includes sifting through old dreams and coming to the realization that some of them have been replaced by new ones.
As I open the windows to our home and start my spring cleaning, I start to smile thinking about where life has taken me and my family. It is hard to believe that it has been six months since we moved to the place we now call home. Six months since we let go of our dream of small town life and moved to a big city. Although the transition seems like it began only six short months ago, the truth is that it really began after our daughter Annie was born and diagnosed with cystic fibrosis.
My husband and I had always seen ourselves raising our family in a small western town. We were both raised in the west and enjoyed everything it had to offer. We had lived briefly in one of America's largest cities before deciding to start our family, but after a vacation to Alaska we were reminded of our dream and decided we were done with city life for good. We jumped on the first opportunity to return to living in a small town. Our son was born shortly after we arrived. We like to say that he grew up “wild.” He was hiking and skiing by the age of two. Our family was immersed and thriving in outdoor culture when our daughter Annie arrived a few years later. We had started to dream about owning some land. Maybe we should embrace homesteading? A tiny house? Maybe at least grow a big garden and get some chickens? But as it turned out, life had other plans.
After Annie's birth and diagnosis with cystic fibrosis, I also faced some health challenges. Whereas I had to spend a year traveling between three states for my care, we found incredible care for Annie within our state. But clinic visits were still several hours away. We started to worry about emergencies and not being able to get to treatment in time. Between the two of us something had to give, but how do you let go of the life that you had become so firmly grounded in?
We took a look at our options and determined what our priorities were. At the top of our list were excellent medical care, job opportunities and somewhere relatively close to family. Unfortunately, the most promising solution was life in a big city. As we reluctantly accepted this, we reminded ourselves that we needed to have faith that this would be a better situation for our family. As it turns out, it has been. We do miss our small town, our friends and the experiences we had there, but we are enjoying our new experiences. Best of all, we have peace of mind knowing that both Annie and I will receive the care we need just a few minutes away.
You've heard the saying “Life is what happens when you're busy making other plans.” Well, I couldn't agree more! We have decided to embrace this new life and give ourselves the permission to let go of old dreams and open ourselves up to new possibilities. Living with cystic fibrosis is not easy but our family has decided to open ourselves up to all that living has to offer. Who knows, there might be another great adventure just up ahead.
Mother of a child with CF
Morgan is the mother of Cade, 8, and Annie, 3, who has CF. Morgan graduated from Montana State University with a bachelor’s degree in Health and Human Development. She spent many years working in the non-profit sector and is now enjoying her role as a full-time homemaker and homeschool teacher. Morgan is a state advocate for the Foundation, a member of the parent advisory council with the cystic fibrosis team at Billings Clinic, and a top fundraiser for Great Strides Billings, MT. She lives in Bozeman, MT with her children, her husband, Colby, and their two faithful dogs, Jack and Sally.
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
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails