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 life was crazy busy having two babies born with CF, Marc and I would wake up 20 minutes earlier to make time for a cup of coffee together.
August 11, 2015
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I'm at lunch with a girlfriend and my iPhone softly sings,
"This life would kill me if I didn't have you
I couldn't live without you baby
I wouldn't want to
If you didn't love me so much
I'd never make it through
'Cause this life would kill me
This life would kill me if I didn't have you."
I'd forgotten to put my phone on vibrate and my sound notification goes off that I'd just received a text from my husband Marc.
"You're kidding, right." My girlfriend says sarcastically.
I agree...yup, it's sappy.
August 11, 1989 Marc and I went on our first date and have been together ever since.
We work daily at being sappy.
When Marc and I were first married he had asked me what it would take to make me happy. I told him, "Wake me up with a cup of coffee."
He has. For 25 years.
No, it's not the coffee that's made me happy, but the 15 minutes we spend every day talking over that cup of coffee. When life was crazy busy having two babies born with CF, we would even wake up an extra 20 minutes earlier to make time for that cup of coffee.
We'd talk about our parenting, our marriage, and our dreams.
In our talks, we'd remind each other the reason why we were so crazy busy with a family, job, mortgage and stress...it was because WE had fallen in love back in 1989.
We'd remind ourselves that WE were a priority in our own lives. WE were a team.
We'd kiss every hello and goodbye, and every good morning and goodnight.
Together we have faced many hurdles and obstacles and you'd be amazed what 15 minutes a day have done.
Then in 2006, we faced our hardest challenge, our biggest fear, our worst nightmare. We faced the loss of our little girl. Cystic fibrosis destroyed her lungs and there was nothing more medical science could do. On Monday, December 4, 2006, our baby girl Jena moved up to heaven. She was 13.
No amount of kisses, talks, or all the coffee in the world could heal our hearts.
We were broken.
We grieved separately.
Marc gave me space to grieve for as long as I needed. I gave him the room to mourn. A loss of a child cuts you at your core, and you are alone with your emotions.
It wasn't pretty.
It wasn't kind.
It was real.
Marc never did stop bringing me coffee, though many a morning it went cold, untouched. We still sat for those 15 minutes, though often it was in silence or mumbled words cased in tears. We had created a family out of love and the deep pain of even our daily kisses hurt our hearts, though trembling, still we'd kiss.
So the ringtone fits.
There are still days when I find myself curled up on the floor in an emotional mess. Alone. And out of the blue, Marc will send me an innocent text of, "I'll be home at 7 p.m." but my iPhone softly sings,
"This life would kill me If I didn't have you
...and it reminds me that life is a beautiful roller coaster adventure if you actively work on the journey...and drink coffee.
At lunch I finish texting Marc a reply, switched my iPhone to vibrate, and I caught my girlfriend searching iTunes for a ringtone.
Mother of an adult and child with CF
Margarete is a public speaker, a freelance writer, and the author of Beyond Breathing and See You at Sunset. But, most importantly, she is a mother of two children who were born with cystic fibrosis: Eric, now 27, and Jena, who “moved
up” to heaven in 2006 at the age of 13. Margarete has been a dedicated volunteer for the Cystic Fibrosis Foundation since 1991. She has served as National Leadership Council Member, National Public Advocacy Co-Chair, and National Volunteer Leadership
Co-Chair, as well as chairing local events. As empty nesters, Margarete and her husband, Marc, continue to raise funds and awareness for the Foundation by doing annual Xtreme Hikes, Golf Events, and galas, all in the hope of one day becoming grandparents
to Eric and his wife, Kourtney’s, children. For more about Margarete, you can visit her website.
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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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