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.
Last updated on October 23, 2012
Each month through the end of the year, we'll feature a special person or team who played an integral role in the 2012 Great Strides walks. We hope you'll find this story to be inspiring as we continue to make Great Strides in our efforts to find a cure for CF!
Walk: Dana Point, Calif., walk held April 28, 2012Chapter: Southern California Chapter - Orange County OfficeTeam: Alexis Wright Family Team led by Doug and Tina Wright, their daughter Alexis, 8, who has CF, and their son Devin, 11.Impact: Raised more than $43,000 so far in 2012
Alexis, 8, who has CF, wants to either be a singer or soccer player when she grows up. Her parents dream of a cure for cystic fibrosis and hope one day that the hardest challenge she'll have to face will be choosing between soccer and singing.
Why I Walk
My wife Tina and I found out that our daughter Alexis has cystic fibrosis when she was 4 months old. It took us a while to come to grips with it, but we knew we needed to do everything we could to fight for a cure. We soon found that the Great Strides walk was a way for us to bring awareness and financial support to the cause, and it's been a major focus for us ever since.
We started our team when Alexis was 4 years old, and two years ago I became the chair for the Dana Point walk in California. We put a lot of work into the walk each year; but the way we see it, this is the most important fight of our lives, so we need to do anything we can to fight for our little girl and make a difference.
What Makes Me Proud
Alexis' outlook on life makes me proud every day. After everything she's been through, Alexis is full of love and finds joy in the smallest pleasures. She lights up the room and the lives of everyone she touches. She's truly an inspiration.
I'm also extremely proud of my son, Devin, Alexis' older brother. As many families dealing with CF know, it doesn't just affect the patient - it affects the entire family. Between the dozens of pills, multiple breathing treatments, doctors appointments and making sure Alexis gets enough food and nutrients into her body, it takes hours of daily commitment just to maintain her health. This puts a lot of our focus on Alexis, and yet I have never heard one complaint from Devin. He's never been competitive or resentful of the extra focus on his sister.
Tina and I try to stay positive about CF around the kids, but I think Devin realized early on what's at stake. Recently, he told us he was thinking about becoming a scientist when he grows up so he can help cure CF. We were so proud of him…we didn't know whether to smile or cry.
Tips for Other Great Strides Teams
When you're fundraising, don't be afraid to put your heart on the line. It makes a huge difference when people know how much their support matters and where your passion is coming from. Also, don't be afraid to ask your company or any organization you're associated with for help - a corporate donation can make a huge difference.
A few years ago I learned that my company, Quest Software, was striving to give more and make a difference. Amazingly, they were having trouble reaching their charity goals so I approached them and said half-jokingly, “If you're having trouble giving money away, I think I can help.” I then went on to tell them about CF and Alexis.
Quest committed to match 100 percent of our donations up to $20,000, which they have now done for two years in a row. Their support has been huge for us - it's doubled what we've raised - and I can't thank them enough.
My Biggest Challenge
It can be difficult to fight CF every day relentlessly, but I know that today we are closer to a cure than we have ever been. Now, my biggest challenge is continuing to reach deep inside myself and turn my passion and desire into more energy so we can reach the finish line.
Our family and friends have been unbelievably amazing. They consistently go above and beyond each year to raise money in our Great Strides walk. Their support means the world to us and our gratitude is endless.
Alexis loves to sing and play soccer. She recently got the lead role as Ariel in a local production of The Little Mermaid and has joined a club soccer team, so she plays nearly every day. She can't decide which career she'd rather pursue when she grows up - to be a world-class soccer player or an actress.
My dream is that we will win the battle against CF and that the hardest challenge she'll have to face will be choosing between soccer and singing.
Alexis' dreams give us the motivation to fight for ours - that one day CF will be a distant memory and everyone who is struggling with it today can survive beyond cystic fibrosis.
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Cystic Fibrosis Foundation
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