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.
Published on September 11, 2013
This feature focuses on a special person or
team who played an integral role in the 2013 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!
Ky., walk held May 18, 2013Chapter: Kentucky/West
Virginia Chapter Team: Julie's Dream Team led by Roy
Ice and his wife, Julie, who has CF.Impact: Raised more
than $123,000 so far in 2013
Why I Walk
Ice was diagnosed with cystic fibrosis when she was 23 after battling lung
infections for most of her life. Julie and her husband, Roy, started a Great
Strides team in 2010 and have raised more than $123,000 in 2013.
was diagnosed with CF when she was 23. She suffered from what doctors thought
was reoccurring bouts of pneumonia. Not long after we were married, she was
taken to the hospital again. This time, a young doctor stepped into the room,
looked at her X-rays, and said, “That looks a lot like cystic fibrosis.”
The diagnosis got us on the road to viable treatment options, and a few years
ago Julie had a bilateral lung transplant.
As a husband, it was devastating to learn about CF and
the prognosis that comes with it. At the time, the life expectancy for someone
with CF was 29, so we got busy living. It's difficult to go from being a young,
carefree newlywed to someone who has to watch his wife go through medical
appointments, treatment options, hospitalizations and surgery.
How We Fundraise
We work with businesses like Buffalo
Wild Wings, Papa John's and Pat O'Brien's to set up special proceeds nights.
and Julie Ice fundraise by getting the local community involved in Great
Strides. “By asking friends and family to come out and have a burger with you,
you are able to make an impact that goes beyond just asking for money. You are
establishing connections and building relationships,” Roy said.
ever ask people directly for money. Instead, we ask people to help support the
search for a cure by going out, having fun and living their lives. And it's
In addition, I've written a book about our story: Julie:
The Courage to Breathe and I will be making a personal donation to the
Foundation from the sales of the book.
What Makes Me
My wife gets up every day and works at keeping herself
healthy. She seldom complains and she really values life. I'm proud of the way
she has tackled this disease. She just doesn't know how special she is. Anyone
who knows her loves her.
Tips for Other Great Strides
The key is to have fun. If it's not fun, it's work. By
asking friends and family to come out and have a burger with you, you are able
to make an impact that goes beyond just asking for money. You are establishing
connections and building relationships.
My dream is to be able to look my wife in the eye and say, “We did it.” I
want to realize her dream, which is a cure for all people with CF. I think we're
a Great Strides walk team today!
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Cystic Fibrosis Foundation
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