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.
My advice to all of you … CONNECT, CONNECT, CONNECT with others who share your passion in the fight against cystic fibrosis.
March 24, 2016
Healthy Attitude, Healthier Lungs
Taking on the Beloved British Tradition: the Gap Year
From day one of my son's diagnosis, my wife Heather and I vowed to do everything in our power to fight for our son. Caring for him, raising awareness about cystic fibrosis and fundraising topped our list. This year, we were fortunate enough to attend the Cystic Fibrosis Foundation's Volunteer Leadership Conference (VLC) for a second time. Connecting with other parents who are like-minded and focused on the Foundation's mission is not only comforting, but needed for insuring that we find a cure for ALL people with CF.
I was fortunate to connect with many great parents during our first VLC in 2015, but also through other chapter events all over the country. I frequently chat, text or call these individuals to brainstorm new ideas and think of ways to make them bigger, better and help them come to life. That is what VLC is all about to me: Having the forum to communicate and collaborate with other parents and employees of the Cystic Fibrosis Foundation.
But you don't necessarily need to be there to take advantage of VLC: Watching, listening and connecting with others can all be done via the live stream and social media channels.
So, without further ado, here are my top three takeaways from the 2016 VLC:
The Foundation is making “great strides” towards treatments and therapies, and this is something we need to continue to support. Real progress is being made, and as CF Foundation President and CEO Dr. Preston Campbell stated, “It's the greatest story in medicine today!"
Dr. Campbell is very open and informative on how the Foundation spends its resources and the money we are raising. As he stated, “It's about knowing where we are going and how we are going to get there.”
We all dream about the day we find a cure, but after listening to Andy Lipman, an adult with CF, speak about his struggles during the “There is No Health Without Mental Health” panel session, I realized that we do in fact need to support the holistic approach to medicine and look at the emotional, mental and physical health of our loved ones fighting CF.
Dr. Bruce Marshall, senior vice president of clinical affairs at the Foundation, explained the many areas they are working on to create and improve. A good example of this is Compass, a free CF Foundation service that I LOVE utilizing. Like many people, I dislike trying to figure out insurance plans more than anything. Aaron Stocks, a CF Foundation Compass employee and an adult with CF, worked with me to select the best insurance plan available for my son through my employer's plans. But not only did he help us select the plan -- he also explained why it would be best for our individual needs. I recommend everyone utilize this arm of the CF Foundation.
With many active families, we have become a community unlike anything I could have imagined. My advice to all of you … CONNECT, CONNECT, CONNECT with others who share your passion in the fight against cystic fibrosis.
And lastly, thank you for all that you do. As a volunteer, advocate and fellow parent of two children with CF, Peter Hodge once told me, “Every single dollar is as important as the last.” It's imperative that we continue the mission of Phyllis Kossoff and the other founding parents of the CF Foundation. I will not, and cannot, let her or any of you down.
Father of a child with CF
Jarrod is married to his wife Heather and is a father of two boys, Camden and Carson. Carson, their younger son, was diagnosed with CF at birth. Since then, Jarrod and his wife have been active with the Cystic Fibrosis Foundation. Jarrod focuses on building relationships with other driven individuals looking to make a real difference in the world of cystic fibrosis. Jarrod is passionate about his family and CF, and has made it his mission to do everything in his ability to make a difference in not only the life of his son, but for all those living with the disease.
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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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