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.
Our community's shared journey makes us unique and unites us in the hardest of times for some and the most hopeful for others.
Catherine C. McLoud
September 29, 2016
Facing the Unique Challenges of a Late CF Diagnosis
How CF Inspired Me to Attend Law School
I recently traveled to Lexington, Massachusetts, joining others from our community to celebrate the
opening of the new Cystic Fibrosis Foundation Therapeutics research laboratory, dedicated to accelerating the discovery of new therapies to treat the underlying cause of CF. In this state-of-the-art facility, the talented CFFT Lab team is working with scientists around the world to explore exciting new technologies that could help put us on the path to a cure for all people with the disease.
I am always inspired by the brilliant and inquisitive researchers who are tackling the toughest challenges in CF and always moved by their personal commitment to our mission. What made my visit to the Lab especially inspiring was learning more about the questions our research team now has the chance to ask, including how to advance new treatments for people with the rarest CF mutations.
Many of these conversations would have been unimaginable just last year. I was struck by how far we have come since I first became involved with the Foundation more than 30 years ago, and I also reflected on our community's journey through a new lens.
When my son Will was diagnosed with CF at age 2, there were few treatments to manage the symptoms of the disease and the pieces of the genetic puzzle behind CF were barely visible. We were told Will could expect to live about 17 years. Like all families receiving this news, our world changed. I focused all of my strength and ability on helping Will stay healthy, thrive and surpass that expectation.
Will was a fighter and grew up to be a tenacious and versatile athlete and later developed a talent for the culinary arts. He shared this passion in a creative way with his friends and our large family. Will took on his disease with a gentle but determined sense of humor, particularly with his mom and his excellent CF care team, who became devoted friends and a firm part of his family.
After a series of hospitalizations, Will lost his battle against CF on May 16 this year. He was 34, and lived a courageous and interesting life. But it was a tough one, his last year especially so, and it was much too short. That is the reality of this disease.
I miss him every minute of every day, but my loss is not unique in the CF community. Many parents, siblings and friends have shared this loss before me, and their compassion and understanding have been a deep comfort -- along with Will's faithful friend, his dog Gatsby, who now lives with me.
The incredible commitment of so many families after their greatest loss is a powerful part of the CF community. Their remarkable strength and support have helped drive so many of our successes and inspired us to do everything we can to put an end to this disease.
Over the past few months, I have also been newly inspired by friends with CF and families across the country whose lives have been changed by the exciting scientific advances made possible by the CF Foundation and all of the amazing people who make up the CF team.
A friend in Colorado whose adult son has experienced transformative changes on Kalydeco made a point of telling me that she is going to stay in the fight. One young woman told me recently that, after being on Kalydeco, she's gained enough weight that her doctors say she may need to go on a diet, advice that she never imagined she'd get. And I know several people taking Orkambi who say that the opportunities that have now opened up for them have made them even more devoted to our mission.
In their different ways, each of these individuals has emphasized to me just how much they owe to the CF Foundation and to our entire community. They know that our job is not done and that there are many more people with CF who do not yet have a treatment. Even though they or their child or sibling now have a drug that treats their CF, what began as a personal commitment to our mission has been transformed into a commitment to everybody living with this disease. “We are not going away,” they tell me, and I know that, like me, they are here to stay.
That powerful sense of a shared journey is the fabric of our community. It is what has made us so unique and successful, and what unites us in the hardest of times for some and the most hopeful for others.
It is a long journey, and it will take our strong and enduring commitment to find the answers for every person with CF, especially those who have
rare CF mutations, as my son did. Though Will won't be here to get the new treatments on the horizon, I will continue our journey to find a cure -- on Will's behalf and for all people with CF. I am proud to be part of such an amazing group, and I know together we will reach our goal.
Catherine C. McLoud
Chair, Cystic Fibrosis Foundation National Board of Trustees
Catherine C. McLoud (Cam) is a seasoned executive with more than 35 years’ experience in leadership positions in the hospitality business, most recently as president of the consulting company Commonwealth Hospitality, LLC. She was elected chair of the Foundation’s Board of Trustees in 1999 and has served on the Board for more than 30 years. Cam became involved in the CF community after her son, Will, was diagnosed with cystic fibrosis. She lives on Johns Island, South Carolina, with Will’s dog Gatsby.
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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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