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.
The night of our first cystic fibrosis-related fundraising gala was memorable in more ways than one. Thanks to new friendships, I got the chance to honor my daughter with CF in a special way.
February 13, 2018
CF Cant Tear Us Apart
How My Care Team and I Grew Together
Our first cystic fibrosis-related fundraising gala was in 2016, and I cried the whole night. I felt a range of emotions -- from sorrow to heart-bursting joy. Not only did I find myself in a room of dedicated,
inspiring people, but there were also excellent speakers who told moving stories. Needless to say, it was just a lot for this new mommy to handle (Avalyn was just over a year old and it was all so "fresh" to me). I got especially emotional when one
of the speakers requested that all CF mammas stand to be recognized.
Obviously, I lost it. I was standing there among women who had been fighting this disease for their children a lot longer than I had -- some of whom had even lost their kids already -- and people were clapping for us as equals.
That same night, we became friends with Alyx and Tommy Danger. Tommy, the founder of the More Than Just Me Foundation, was auctioning the chance to design a flag that he would carry to the top of a mountain. It would be the fifth of seven summits for
the “More Than Just Mountains” campaign, which raises funds and awareness for cystic fibrosis.
We bid hard for that flag, but we were eventually beat out by another family. I looked at my husband and said, "Next year, that flag is mine."
So, that brings us to 2017 and last year's gala. When Tommy's flag went up for auction, I went at it with all I had. It was an intense battle, and I won! After we were declared the winning bid, Alyx Danger came running over and gave me a giant hug. You
could not have taken me off the cloud I was on that night.
My next challenge was to design the flag. What would I want at the top of that mountain? Avalyn is too young to have an opinion of what to put on the flag, so I couldn't ask her. My husband didn't want to weigh in, as he wanted it to be my creation and
something I could be proud of putting together myself. But the more I thought about it, the more I realized one thing was for certain: I wanted Avalyn's face up there. I wanted her sweet, dimpled smile to reach high above the clouds ... her very first
So, I started with my favorite photo. Then, I added the meaning of her name: beautiful breath of life. But it still didn't feel complete. I really wanted my daughter to gain something important from this ... something that would last a lifetime. But what?
I considered Tommy and his More Than Just Me Foundation, and suddenly, I knew that my wish for her was to feel emboldened and supported. I began looking for verses, quotes, anything that would make a heart swell and elate. What I landed on was Dr. Seuss.
After tweaking and customizing it for Avalyn, I settled on the following:
It's wider out there in the wide-open air,
and wherever you fly, you'll be best of the best,
wherever you go, you will top all the rest.
You'll move mountains, Avalyn,
and you'll do it with flair.
Today is your day,
your mountain is waiting,
so get on your way.
Mother of a child with CF
Brittany and her family live in San Diego, California. She is the stay-at-home mom of an 18-month-old with cystic fibrosis. Brittany spends her spare time blogging and sharing tips and recipes she's discovering through her website. She actively fundraises for the Cystic Fibrosis Foundation and loves to speak to various groups in their honor. Brittany enjoys cooking, reading, crafting, and hiking. You can find her on Facebook or email her at firstname.lastname@example.org.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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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