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.
Meet John Thomas, a 2016 Great Strides Ambassadors. The Great Strides Ambassadors are here to inspire all those who participate in Great Strides walks across the country and to represent the face of the adult cystic fibrosis community.
Published on June 10, 2016
Team: Living My Dreams with CF, since 2009
I stride for a number of reasons.
I stride because it's exciting. I get to personally meet the people who spend their time and energy raising money and awareness toward a cure for CF. Great Strides is also the only event that I can attend and see the people that I connect with online.
And of course, I stride for my growing family. I am married with a 3-year-old daughter and twins on the way! I often look at my toddler and think to myself, “This is why I stay committed to my treatments.” My wife is my biggest source of inspiration. She is more of a warrior than I am. It takes a special person to take on a partner with a life-threatening disease. I want to be around for her and watch my children grow up.
Although I formed my own team -- Living My Dreams with CF -- in 2009, I have been walking in Great Strides for the past 12 years. I am proud to say that I haven't missed a single walk yet!
It's wonderful to have an opportunity to show people that someone with CF can thrive and do the “normal” functions of people who do not have this disease. I want to let the younger generation know that having CF doesn't prevent you from living your life and chasing your dreams. My goal is to spread a message of positivity because although life with CF is hard, it can still be very rich and rewarding.
I have been fortunate enough to speak at the last two Northern Ohio Chapter walks, which is my way of giving back to the community. I truly believe that I will live into my 70s or 80s because of the advancements made in cystic fibrosis research and care. Today, many people with CF have a higher quality of life than in years past and there is so much more that is possible now. It's a great time to be a part of the CF community.
While I enjoy being able to hold a full-time job in accounting and finance, I am proud to serve others outside of work. As a Great Strides Ambassador, I can share how the Foundation has given me hope for the future.
I mainly tap my family and friends for donations. I am big into personal asks, and I am grateful for their support of my Great Strides team every single year.
It means the world to me. The CF Foundation has given me a future. If it wasn't for the Foundation, I probably wouldn't be here today. We wouldn't have Kalydeco® or lumacaftor/ivacaftor (Orkambi®), the vest or the clinics that we go to for support. Who else would have committed time and research to this disease, which affects such a small subset of the population? Who else would have provided research dollars? Who would have funded the development of new treatments? If it wasn't for the Foundation's former president and CEO, Dr. Bob Beall, and his visionary approach and his faith, the community wouldn't be where it is today. I credit the CF Foundation for allowing me the chance to live out my dreams with CF.
I want us to eradicate CF, the way we eradicated polio. I want this disease to become something that people only read about in textbooks. And, someday, I want to walk my daughter down the aisle and become a grandparent.
Visit our Great Strides website to learn more about how you can get involved.
Share this Page
Follow Us On
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails