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.
Many people have asked me why I would want to climb the highest mountain in Africa with no climbing experience. The answer is simple: an undeniable love for my daughter, Jennifer, and a determination to raise money for all those living with cystic fibrosis.
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Many people have asked me why I would want to climb the “Roof of Africa” -- the continent's highest mountain -- with no climbing experience. The answer is simple: an undeniable love for my daughter, Jennifer, who is challenged to breathe every day.
At an elevation of 19,341 feet, I wanted to experience what it is like for her -- taking three or four breaths for every one breath of a healthy person and feeling constant pressure on my chest as if someone were standing on it. Ultimately, my goal was to increase awareness about cystic fibrosis and Jennifer's story and raise money to improve the quality of life for all those challenged with this disease.
My journey began in Arusha, Tanzania, at a lodge hidden in the forest at the base of the mountain. Equipped with lifesaving cold weather gear, the group of 24 people who would be on the climb met for the first time: 18 porters, a guide, an assistant, crew leaders, a cook, Robert (a documentary filmmaker who will be making a movie about our journey), and myself.
The 49-mile climb was set over a period of eight days. We climbed rocks in a very steep environment with little vegetation and no animals, as they are largely unable to survive the extreme temperatures and conditions beyond the lower slopes. Our only focus was the next step or the next rock that we could grab and use to pull ourselves up.
It wasn't long until I found myself at what is considered to be the most dangerous part of the climb: a quarter-mile high, sheer rock formation. For the next 6-8 hours, I crawled on all fours at a 75-degree slope, grabbing one rock, then the next.
At this altitude, I felt like I finally understood what my daughter goes through every moment of her life just to breathe. As I scaled the rock before me, I had to take deep breaths -- heart pounding and chest caving -- constantly reminding myself to breathe slowly and calm down. I felt like I was breathing through a straw, while my chest felt as if it were collapsing due to the lack of oxygen. It was as if I just ran a marathon, and at the finish line, there was no air.
In the end, my trek up Kilimanjaro was more of a journey toward a greater understanding of the daily battle my daughter, Jennifer, has fought her entire life. Although my discomfort in breathing cannot compare to her 38 years of living with CF, I can say that I have never been more proud of the warrior she is and her unrelenting determination to find a cure for this deadly disease.
CF takes both a mental and physical toll. Jennifer and many others living with the disease spend hours doing treatments and taking 50 or more pills each day. Research has been aggressive, but we need more.
I like to use the analogy that CF is like two minutes left in a football game; we just don't know how long those two minutes will be. This is why I believe that we need to give Jennifer and others the quality of life they deserve -- now.
That is why I climbed the “Roof of Africa.” That is why I fundraise for CF.
To watch my video journal of the climb, click here.
Father of an adult with CF
Bob served in the U.S. Marine Corps and is a graduate of the University of Maryland. For the last 30 years, he has been an entrepreneur. Ever since his daughter, Jennifer, was born with CF, Bob has been very active in the Maryland Chapter and an active Board member. Bob and his team organized the first Great Strides walk in Annapolis, Md., which is consistently ranked among the top ten in the country. In addition, Jennifer’s Journey has been honored as the number one team in Maryland for fundraising. You can follow Jennifer’s Journey on Facebook, visit the site for Bob’s climb up Mount Kilimanjaro, or email him at firstname.lastname@example.org.
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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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