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.
A reality show inspired this family to create an ingenious fundraising and awareness event for cystic fibrosis.
October 14, 2015
Coming Away Feeling Lucky
One-on-One Live: Starting the Conversation About Emotional Wellness
After speaking with Kate Becket -- mother of two young children, one with cystic fibrosis -- I felt the sudden urge to run around the Cystic Fibrosis Foundation office here in Bethesda, Maryland, and hide scavenger hunt clues under people's desks and next to the coffee machine.
The Becket family has put together an ingenious fundraising and awareness event for CF inspired by the hit TV show, “The Amazing Race.”
Named in honor of 4-year-old Anna Becket, who has CF, Anna's Amazing Race was held on Oct. 3 in York, Pennsylvania, and the participants were every bit as motivated as the contestants on the real show.
The format of the race was pretty simple: 12 teams of four people -- dressed in coordinating colors or costumes -- followed rhymed riddles from 10 different clue cards hidden around town that either contained a task or a puzzle. Teams were given a total of three hours to complete the race.
The fourth annual event uses different challenges each year, with this year's event featuring a twist and a bonus task -- the addition of an extra team member. “Usually the second that people get their first clue they start racing toward their cars, so this year we wanted to shake things up by making them turn around half way to the parking lot and have the first task set at the start location,” explained Kate. “Since my husband's favorite movie is 'Weekend at Bernie's' and it's almost Halloween, we decided that the bonus task would have teams making scarecrows who would then be their team's fifth member and accompany them on all challenges.”
In addition to tasks that helped bring out everyone's comedic side, Kate also made sure to incorporate tasks that helped participants better understand the realities of the disease. “We try to have at least one task that teaches people about CF,” said Kate. One of the physical tasks challenged two people from each team to run up a large hill and then try to fog up a mirror by huffing through a toilet paper roll. After the mirror was fogged, the third teammate needed to write Anna's name onto the mirror while the fourth teammate quickly snapped a picture.
This task, designed to show participants what it is like for Anna to breathe with a decreased lung capacity, was introduced by this clever riddle:
For this task we want to raise your awareness,And sample some of Anna’s therapies for fairness.You’ll need to find York’s biggest hill,Start at the bottom and muster your will.
At the top you'll find a reservoir,
On Country Club Road with the college not too far.
Start running up and on your way you'll find
A task to complete with “Anna” in mind.
Another teachable moment featured a CF spelling bee, which was set up with folding chairs, a microphone and someone to read aloud each word and offer definitions -- the real deal. One at a time, each person had to attempt to spell the words from a given list, with all 10 words spelled correctly by each team. If I had been fortunate enough to compete in Anna's Amazing Race, I am fairly certain that during this task my team would have tried to vote me off the island.
Although, I feel like I could have brought some strong competition to the “spirit award,” which was given to the most creatively costumed team. The team that dressed up as the Power Rangers -- who were so dedicated to their personas that they showed up to the event blasting the theme music through their car stereo and routinely busted out ninja moves -- won this year's award. But I was told that the four girls that dressed up as characters from Taylor Swift's “Bad Blood” music video were a close second.
The event concluded with over $9,000 raised for the Becket family's Great Strides team, and all who participated came away with a better understanding of what is means to live with CF. The event was clearly a hit, and I only see it getting bigger and better each year.
Former Writer/Editor, Cystic Fibrosis Foundation
Dora previously worked at the Foundation as a writer and editor. During her tenure, she loved to listen to others share their memories and experiences, and consumed storytelling in all of its different forms. She constantly looks for the uniqueness in everyone's story. Dora has a B.A. in communications from the University of Maryland, College Park, and an M.S. in public policy and administration from the London School of Economics. Born in Budapest, Hungary, Dora was raised mainly in the Washington, D.C., metropolitan area where she currently resides today.
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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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