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.
Although I'm glad that my two children with cystic fibrosis will soon have the opportunity to try Trikafta, I am also a little worried about whether they will have side effects and how well they will do on the drug long-term.
May 20, 2021
Medical Milestones, and the Next Generation of the CF Community
Pursuing a Career in Radio and TV Despite My CF
I used to spend a lot of time with my grandmother in large bingo halls surrounded by die-hard bingo fanatics. If you have ever had the joy of playing bingo at your local fire station or VFW, then you know there's a period where you can see the next ball
to be called, but it doesn't count until the bingo caller says the words. The anticipation when you know you are about to have bingo is exhilarating, but you also have this moment of doubt. Heaven forbid you call bingo when you do not, in fact, have
bingo. Waiting for the Trikafta® approval for ages 6-11 is a lot like waiting for your turn to call bingo. I can see that our turn is coming, and I feel all
the hope and joy that comes with that. After all, I have been waiting for this moment since the first modulator hit the market in 2012. Despite this, I never
expected to also feel the apprehension about entering the unknown world of highly effective modulator therapy.
Dara with her husband Marco and children Maximilian and Penelope.
As a parent to two children with CF, there is great pressure on me to ensure my kids stay as healthy as possible and to make the most informed decisions about their treatment plans. Since the approval
of Kalydeco®, I have tried to manage my own expectations of what these new therapies could mean for my children. I have stalked social media to learn as much as I can from those who have been able to start their own therapies. I have read
countless journal articles and blogs to understand the good, the bad, and the ugly. There have been many before us who have started these new therapies, including the amazing people who enrolled in the clinical trials,
and I'm blessed to be able to learn from their experiences to help inform me on what a “new CF” may look like for my kids.
Despite the incredible feeling of relief and gratitude that we finally have something to help treat the underlying cause of CF for us, I am also terrified that somehow I will make the wrong decision here.
As I watch for the news of the much-anticipated U.S. Food and Drug Administration approval of Trikafta for ages 6-11, I can't help the negative scenarios from creeping into my mind: Will this work for my kids? Will they suffer from side effects? Will
they have to stop this therapy and bring us back to when something didn't work for them? With all those worries comes the guilt that I am actually questioning this gift we are about to receive. It was not too long ago that the thought of a therapy
that would work for my children was too far in the future to seem real -- or worse -- might not occur in their lifetime. And I know there are so many who don't have the options to take modulators and who continue to feel that the “new CF” we are starting
to hear about is just outside of their reach. I wrestle with how to resolve the odd juxtaposition of hope, anxiety, and guilt that I now find myself grappling with.
I would have never imagined I would question myself like this when it came to my children initiating modulators. I have prayed every day for something to help my children. But, as the parent, my kids' health and wellness fall squarely on my shoulders.
These new therapies do not come without risks. Modulators are a new kind of therapy, and I worry about what it means for my kids to be on these types of drugs for decades. It is also very difficult to trade an unknown CF for the one we have learned
to manage and live with, especially when your children are relatively healthy. Ultimately, I'm responsible for teaching my children that it's OK to be cautious of a new therapy, to learn to advocate for themselves, and that it's important to listen
to their bodies and tell me and their care team when they feel different -- both the good and the bad. And, just with all other therapies, we need to carefully weigh the risks and benefits through open and honest
conversations with our care team. Despite this feeling of hope mixed with anxiety, I have nothing but gratitude for my kids to have a chance to try this new therapy. We are so close to being able to yell, “Bingo!”
Interested in sharing your story? The CF Community Blog wants to hear from you.
Director of Clinical Research Awards, Cystic Fibrosis Foundation
Dara has worked at the Cystic Fibrosis Foundation since 2017. Previously, she was a science officer for the Congressionally Directed Medical Research Programs and Research Associate for the Frederick National Laboratory supporting the National Institutes
for Allergy and Infectious Diseases. Dara is committed to helping find a cure for her two children who have CF, Maximilian and Penelope, and actively fundraises for the Maryland Chapter. She is also a member of the Family Advisory Board at the Johns
Hopkins CF Care Center where her children receive their care. Dara lives in Frederick, Md., and, in her spare time, she enjoys hiking and being outdoors with her husband, two children, and two rescue dogs, Marshall and Molly.
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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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