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 October 16, 2013
Each month through the end of the year,
we'll feature 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!
Walk: Huntington Beach walk, held May 4, 2013Chapter: Los Angeles
Office - Southern California ChapterTeam: Ryder's
Stryders led by Raven Pugh, her husband Britt, and their son, Ryder, 3, who has
CF.Impact: Raised $20,000 so far in 2013
Raven Pugh, mother of Ryder, 3, who has
cystic fibrosis, is determined to help all families touched by CF. This year her
Great Strides team, Ryder's Stryders, raised $20,000, and Raven is already
looking ahead to next year. “Our family is 100 percent committed to seeing the
rest of the CF community get their miracle. We aren't going to finish until
everyone has a treatment of their own. It's why we walk in Great Strides,” Raven
Why I Walk
Learning that Ryder has CF was
the most difficult phone call I've ever received. It was one of those
drop-you-to-your-knees moments. We really didn't know much about CF or about the
medical advancements being made, so we didn't think we were going to have a lot
of time with Ryder.
It wasn't until we got in touch with the Foundation
that we learned about all of the progress that's been made. Ryder is eligible
for Kalydeco. Knowing there is a light at the end of the tunnel really saved
We feel so lucky knowing that Ryder has the G551D mutation. Our
family is 100 percent committed to seeing the rest of the CF community get their
miracle. That's our goal. We aren't going to finish until everyone has a
Kalydeco of their own. It's why we walk in Great Strides.
Look Forward to
The best part of the walk is being able to see
friends, family and the entire community come together. Sometimes we have people
who we haven't seen in months, or even years, fly out to support us. It's so
exciting to watch people get motivated not only for you, but for other families
touched by CF.
What We're Thankful For
Ryder was diagnosed, before we knew anything about CF, my husband and I were
pretty self-involved. We didn't have a cause. We just lived our lives. Once
Ryder was diagnosed, we found our cause and it really impacted our friends and
family. Everyone just stepped up and made it their cause as well. That support
has given us the courage to face this disease head on.
Other Great Strides Teams
I would encourage people to learn as
much as they can about CF and keep themselves active with the Foundation.
Through the Foundation, you find community and an amazing array of resources,
from educational and medical information to tips and tricks for building your
Great Strides team.
My dream is that
Ryder won't have to wake up on his wedding day, Christmas, or birthdays and have
his first thought be about CF or starting his therapy or taking numerous
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Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
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