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 a member of the IT department at the CF Foundation, it's easy to sometimes feel disconnected from the people we serve. This is why the Foundation's Speaker Series, which recently featured the story of Sara and Michael Dun, is so meaningful.
September 9, 2016
Finding My Truth: Learning to Cope with CF
Why We Decided Not to Have Kids
As a member of the Information Technology (IT) Department at the Cystic Fibrosis Foundation, I get the amazing opportunity to help bring together people with cystic fibrosis, care center staff, CF Foundation employees, researchers, families and many others through all different kinds of technologies. One of my favorite parts of the job is that our technology projects span all different departmental areas, so I get to see so many different aspects of the work we do at the Foundation. On the flip side, however, this also means that I often don't get to interact directly with the CF community and the people who battle CF every day.
This is why the CF Foundation Speaker Series is so meaningful to me. On any given day, my fellow team members and I are completely focused on the tasks at hand -- testing a website enhancement, meeting a critical launch deadline or working with our developers to plan out a new project. It's easy to get lost in this world so that day to day, cystic fibrosis can seem nebulous or intangible.
The Speaker Series reinforces the fact that CF is not only real but pervades every part of life for people with CF, such as motherhood, fitness, work life and love life. CF is not something that the people who live with it have the luxury of forgetting about when they're in the throes of daily life. That can make CF sound scary and debilitating, but Sara Dun and her husband, Michael -- the most recent speakers in the CF Foundation Speaker Series -- made life with CF sound like … life. As they often reiterated, “it is what it is.”
That's not to say that Sara's description of her life with CF made it sound like a breeze. In fact, her story of unwavering commitment to her CF treatment regimen, the hours she spent finding the best health care providers for her and the struggle to build the family she so desperately desired conveyed the exact opposite. But as I followed Sara through her story -- from learning at the age of 14 that she had already surpassed the predicted median age of survival for someone with CF, to getting a lung transplant and running a half-marathon less than a year later -- I couldn't help but be struck by her perspective on life. Sara is someone who described recovering from a surgery that split her entire chest cavity apart as “pretty painful,” the same way I would describe a sprained ankle or a sore throat. And even when her health dipped, Sara was so driven to exercise that she ran an oxygen line out to the pool so that she could swim laps.
Hearing stories like Sara and Michael Dun's is what makes the work we do at the CF Foundation so powerful, and is why the Speaker Series matters to me so much. The series isn't just a chance for us to see that CF is real or worthy of all the hard work being done to eradicate it, although it is. It's a chance for us all to see that the people who fight CF everyday are tough as nails and refuse to be defined by their disease.
When CF speakers come in, we walk out reinvigorated, inspired by our connection to people like Sara, excited to get back to the important work at hand and honored to be a part of the CF community.
Project Manager, Cystic Fibrosis Foundation
As IT project manager for the Cystic Fibrosis Foundation, Sarah manages a portfolio of technical projects that support strategic objectives for the therapeutic development and basic sciences teams. Sarah received her B.A. from the University of Virginia and is a certified Project Management Professional (PMP). In her free time, she enjoys reading, cooking, trying new restaurants and spending time with friends and family.
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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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