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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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 October 3, 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!
TN walk held April 21, 2013Chapter: Tennessee
Chapter - Nashville Office Team: Kenneth King's
Believers, led by Ginger Birnbaum, her daughter Emma Virginia, 4 1/2, her son
King, 20 months, who has CF, and her husband, Alex.Impact: Raised $40,000 so far in 2013
leader of Kenneth King's Believers, involves the community in her fundraising
through cause-marketing. Each year, she creates pin-ups that people in her local
community can buy, which are displayed on walk day.
Initially, our son, King, had two failed sweat tests. My husband
and I just kept trying to explain away his symptoms.
When the CF
diagnosis was confirmed, we were in shock, but we also had hope. We knew about
all of the research that was being done to try to find a cure, and we wanted to
be part of it. We got involved in Great Strides a month after his diagnosis and
immediately started fundraising.
How We Fundraise
We have 24 teams in 14 different markets, so we really try to do what works
best in each market. Nationwide, we use letter-writing campaigns, emails and
social media. Here in Chattanooga, we work with local restaurants and retailers
to do a lot of cause-marketing fundraising. We print pin-ups people can buy and,
this year, we even had a billboard.
What We're Thankful
The support from friends, family and neighbors has been
amazing. It's an easy way for us to share our story, and an easy way for others
to do what they can to help. Having so many people acknowledge this disease and
take a stand to help find a cure is really wonderful. That support gives us the
strength and energy to continue this fight.
National Family Great Strides Team Kenneth King's Believers is made up of 24
teams in 14 different markets and raised $40,000 to help support the search for
a cure in 2013.
Tips for Other Great Strides Teams
I would encourage new teams to find creative and unique ways to get as many
people involved as possible. Don't be afraid to try new things. Getting your
local community involved through cause marketing also creates a lot of
excitement and that gets people interested in helping out.
My dream is for my son to have a life that will be
manageable and long. I really want to see a control for this disease that does
not create daily, personal challenges for him.
Follow Us On
With more than 70 chapters and offices across the country, it’s easy to find and join a local Cystic Fibrosis Foundation chapter near you.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
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