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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
Having spent her career working for a cure for cystic fibrosis, Patty Burks is still not content. She wants to remember her son in a way that makes a difference for others. That's why she has made the CF Foundation a beneficiary of her life insurance policy. This gift to the Foundation meets a need in her heart.
Patty Burks, M.A., RN, CCRC
September 16, 2016
Teaching the Teachers: Putting a 504 Plan Into Practice
Finding a Balance Between CF and Childhood
I have dedicated my career to helping people with cystic fibrosis ever since my second child, Jonathan, was diagnosed at 8 weeks of age.
When Jon Jon was alive, my life seemed to revolve around his frequent hospitalizations and demanding care schedule. Even as a stay-at-home mom, I struggled to be there for him and to focus on my other children, Daniel and Bekah.
CF takes a huge toll on families. Your other children may, at times, pay a high price. Your thoughts, worries and prayers focus on the needs of the one child. And even though you give it everything you have, you may still lose the battle.
Jon Jon, the boy who could play chess by kindergarten and poker by first grade, who loved big dogs and girls with long hair and who, more than anything, loved to make people laugh, died in 1993 at age 11. How could death swallow up someone so full of life?
The loss of my son felt at times like more than my heart could take. We as a family hurt and we as a family grieved. Over time, I found the loss changed me as I became committed to seeing this disease cured. I wanted to be a part of the solution. Within six months, I enrolled in classes to prepare for nursing school.
Health care professionals kept our family's heads above water so we didn't drown in the sorrow. They helped me cope -- which in turn enabled me to help my surviving children. When I considered becoming a nurse, I thought, “What an honor to be part of such a high calling.”
My first nursing position was on the general medicine floor at St. Louis Children's Hospital, where I took care of many children with CF. I didn't share my personal story with the families. I didn't want it to be about me -- I wanted the focus always to be on them.
Eventually, I was hired as a cystic fibrosis research coordinator at Washington University School of Medicine (Wash U.). I was part of a team that was busy doing what I had been praying for, for so long. When Jon Jon was diagnosed, there were no CF-specific drugs. There was little evidence-based medicine. At Wash U., we did the Kalydeco study that brought what some call a “wonder drug” to market. I can't tell you what it meant to me to make real progress on this disease. I know firsthand that real people need real drugs, and they don't have time to wait.
Today, I serve as the director of clinical trial affairs at the CF Foundation, where I help support the 82 CFF-accredited Therapeutics Development Centers and the clinical trials team. I remain highly motivated to make a difference. By the time I retire, I will have seen the ball move forward in meaningful ways. I know we are helping to answer the prayers of mommies, daddies and grandparents. It's a privilege.
Having spent my career working for a cure, I'm still not content. I want to remember Jon Jon in a more enduring way. I don't want his name to be only in the hearts of those who loved him and on a gravestone. I want his life to stand for something more. I want to remember him in a way that makes a difference for others.
That's why I have made the CF Foundation a beneficiary of my life insurance policy.
When I pass away, I want my two surviving children to see that Jon Jon is remembered, too. For me, this gift to the Foundation meets a need in my heart. It's much greater than the money. It's the way to heal my heart and bless my children.
We hope you too consider making a legacy gift. It's easy to do, and the CF Foundation is very helpful in the process. The Foundation offers a great (and free) publication called “Easy Ways to Leave a Legacy” that can help guide you if you also want to leave an enduring legacy. You can obtain this by visiting www.cff.org/legacygiving or contacting Tricia Benson, Senior Director of Planned Giving at email@example.com or 240-482-2845.
Patty Burks, M.A., RN, CCRC
Director of Clinical Trial Affairs, Cystic Fibrosis Foundation
Prior to joining the CF Foundation, Patty served as a CF research coordinator at Washington University School of Medicine in St. Louis, Mo. There, she was part of the team responsible for running CF clinical trials and had the great joy of working with children and adults with CF. At the Foundation, Patty's work focuses on supporting clinical research teams across the country so they can continue to provide high-quality, timely conduct of clinical trials.
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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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