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.
As the mother of a child with CF and volunteer for the CF Foundation, I know first-hand the extraordinary things that Dr. Bob Beall has done for our community, and I am grateful for the legacy of hope that he leaves behind.
October 2, 2015
A Little Less Lonely
My Promise to the CF Community
Yesterday, Dr. Bob Beall, long-time president and CEO of the Cystic Fibrosis Foundation,
handed over the reins to his successor, Dr. Preston Campbell.
Over the last several years, I had the opportunity to get to know Dr. Beall through
my volunteer work with the Foundation. I deeply admire him, both as a brilliant professional and true friend.
If you are new to the CF community, you may have heard of Dr. Beall but may not know all that he has done to transform this disease. Just a few generations ago, children diagnosed with cystic fibrosis were not expected to live long enough to attend elementary school. Today, 50 percent of people with CF are over the age of 18. New medicines and an increased understanding of CF have led us to this hopeful place. Dr. Beall worked nearly his entire career to bring us here.
venture philanthropy model led to the
breakthrough drugs Kalydeco and Orkambi, for example, which have been completely life-changing for some people with CF.
My son, Brady, has been taking Kalydeco for almost four years, and it is impossible to describe all the positive ways that it has impacted his life. It seems to have halted the progression of his lung disease before any permanent damage could be detected by CT scans. Today, Brady no longer requires the intense maintenance and
breathing treatment schedule he needed before. His serious sinus issues completely disappeared when he started taking the drug. He regained his sense of smell, which had been completely lost for years. His
digestion improved dramatically -- no more tummy aches -- and he grows bigger and healthier day by day.
One thing that I didn't expect was the huge impact this therapy has had on my life and my entire family.
It is really difficult to realize the weight of the burden that CF places on your shoulders until that burden has finally been lifted and you are free to experience a new feeling of lightness.
Every single day I wake up feeling so incredibly thankful that Brady has Kalydeco and can breathe easily. And, not a day goes by that I don't give thanks for Dr. Beall and his dedication to helping families like mine. He is my hero.
There is no doubt that through the years, many remarkable individuals have played a part in bringing us to where we are today with
CF treatments. But in my opinion, no one has had a greater positive impact on the lives of those living with CF than Dr. Bob Beall.
He took the risk of leading us in a completely new direction, and it has paid off big time for my family and many others. I am forever thankful and deeply appreciative that he gave so much of his time, energy and brilliance to not only me, but the whole CF community.
While I am very sad that Bob is stepping down, I know that he leaves the Foundation in the
very capable hands of Dr. Campbell, who has tirelessly advocated for the community alongside Dr. Beall for the last 17 years. I also know that the best way to honor Dr. Beall's work is to forge ahead at full speed until we finally realize the goal he has always visualized -- a cure for CF.
Mother of a child with CF
Rebecca currently serves as National Advocacy Co-chair Emeritus for the CF Foundation. Locally, Rebecca is the volunteer chair of the Great Strides walk in Spokane, Wash., and serves on the Parent/Family Advisory Board for the CF clinic at Sacred Heart Hospital in Spokane. She currently lives in Coeur d'Alene, Idaho, with her son Brady, who has CF, and her husband Brock. Follow Rebecca on Possibilities; @Luckycfmom on Instagram; and @luckycfmom on Twitter.
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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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