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.
When my sister passed away last year from cystic fibrosis, my family discovered that the computer with her list of requested arrangements had been wiped out. Little did I know, the damage control we did in the wake of this would take me on a very special journey.
September 13, 2017
5 Ways I Help My Daughter Sustain Her Daily CF Care
Learning to Embrace Treatments Around My In-Laws
What's on your “bucket list?” Seeing the Eiffel Tower? Learning to play the guitar? For mine, I want to cage dive with great white sharks. But what if you weren't healthy enough to do all the things you wanted to do? And even more, what if you didn't think you'd live long enough to finish most of the things on your list?
Last September, my sister Kelsi passed away after a very long battle with cystic fibrosis. She had always mentioned to my family that in the event of her death, there was a file on her computer with all the arrangements she wanted for her funeral, and that I would know how to find it. When that horrible day finally came, I was totally shocked and upset when my mom came to me and said, “Oh no! Her computer got wiped out 2 months ago!” Unfortunately, it had been having some major technical issues and had to be wiped clean.
I checked her computer, and sure enough, there was nothing there. No pictures, no documents, no videos ... nothing. If you knew Kelsi, then you knew that she didn't want a typical funeral and it was very important to us that we do it the way her unique spirit would have wanted it done.
After hours of panic, we thought that she maybe could have backed up the list on her phone. With some begging and the help of her phone carrier, we were able to retrieve her information from the cloud. And suddenly, there it was: the dress she wanted to wear, the songs she wanted played, what she wanted on her gravestone, and more.
But that wasn't all. I now had access to every single note backed up in her cloud. As I scrolled through her lists of thoughts and memories, I came across one called “Un-Bucket List.” What's an un-bucket list, you may ask? Well, I'll never know for sure, but my guess is that it was a list of things she wanted to do before she died, but never thought she'd be able to do -- her un-finished list.
Just a few weeks later, I realized a trip I was taking with my family would put me close to the location of one of the items on her list: the famous Biltmore Estate in Asheville, N.C. When I saw it on Kelsi's list, I just knew it was something I had to do in her honor. So, I rented a car and headed to Asheville. There, I spent hours exploring the huge home and its beautiful gardens. Even though I went by myself, it felt like Kelsi was right there with me all day long. Everywhere I looked, I saw so many things that made me think, “Oh, Kelsi would LOVE that!”
When I posted a picture online from my day at the Biltmore and told the story of how I ended up there, I received such an incredible response from people encouraging me to finish her list. So, I decided that I would. Although I knew that finishing Kelsi's list would help keep her memory alive on a personal level, I wanted it to be something more than just me traveling around to cool places. Don't get me wrong -- that sounded GREAT, but I ultimately wanted to use it as a tool to raise awareness for CF. Last week, on the one-year anniversary of Kelsi's passing, I launched my blog, The Un-Bucket List, where anyone can follow along and share my journey, as well as a passion fundraiser to go along with it.
Even though Kelsi never got to do all the things she wanted to do, I was so happy to see one item checked off on her list: our road trip to San Francisco in 2015. If you've ever driven up the California coast, then you know it is home to some of the most gorgeous sights in America. And let's not forget the REAL highlight of her trip: the “Full House” house! As for what else is on the list ... well, you'll just have to wait and see.
Every day, I am thankful for what a special gift Kelsi left me. Now, it is my turn to continue this exciting journey and spread CF awareness so that one day, everyone living with CF will be able to finish their bucket lists.
Sibling of an adult with CF
Kristen has been volunteering and fundraising for the Cystic Fibrosis Foundation since 2008, and has served as the chair for the Los Angeles CF Climb since 2013. She is a television and digital host/producer who, after losing her sister, Kelsi, to CF in 2016, began her latest project, The Un-Bucket List: a travel blog where she will finish Kelsi’s bucket list to raise awareness for CF. You can follow Kristen on Twitter, Facebook, and Instagram @kristenbrockman and @theunbucketlist.
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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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