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.
With another fantastic Volunteer Leadership Conference (VLC) in the books, I want to share some of the things we learned and how we can keep the momentum going through National Volunteer Week, and all year long.
April 12, 2018
4 Tips for Balancing Motherhood With CF
How My Poem “Monster” Describes My Journey With CF
On the Sunday morning after the 2018 Volunteer Leadership Conference (VLC) I sat on a plane, homeward bound to Miami, having just spent a week in Washington, D.C. I felt excited to know that at the end of my 1,052-mile journey, my granddaughter Delaney
and son Brian would be at the airport waiting for me.
Headphones were attached to my iPad, music was playing, and my seatback TV was set on my trip's flight map. We took off and the city started to fade away. I looked at the map, which had us flying right over Bethesda, Md., home of the Cystic Fibrosis Foundation's
office. I got a little chill as I realized that Coldplay's “Fix You” was playing on my iPad. “When tears come streaming down your face …” Yes, the tears started flowing.
It was an emotional and powerful weekend. Paul Motenko and I knew that when we accepted the position as 2018 VLC co-chairs, we had been entrusted with the awesome responsibility
of representing each and every one of you as we planned this very special and important weekend.
As I stood before you on the stage and looked out into the ballroom, I didn't just see 600 dedicated volunteers and staff members. I saw 600 of you, the loved ones that inspired you to be there, and the volunteers you were representing -- your walk teams, your gala committees, your golf foursomes. And as I looked back at the cameras that were filming the livestream for people at home, I knew that our reach was far greater.
Now here is the question: How do we take what we learned at VLC and share it? How do we spread our passion and make sure we find more volunteers, foster more relationships, and show more gratitude for those who are already in this fight with us?
Next week, April 15-21, is National Volunteer Week. It's the perfect time to engage new volunteers and to thank those who are already giving so much to the fight against CF. If each of us committed to finding one new volunteer, we would double our
ranks in just one week.
Some say that we are an army, some call us a community. But for many, we are a family. Whatever we are, there is an unbreakable thread that runs through each and every one of us. We are parents and grandparents and spouses and siblings. We are aunts and
uncles and cousins and neighbors and friends. We are passionate volunteers who are unstoppable. Because of us, there will someday be a cure for ALL with CF.
As I got ready to get off the plane and get a hug from Delaney, one last thought crossed my mind. I often say that “a real friend doesn't pull you out of a hole, they jump in with you.” My hole is a very crowded one because you all are in there
with me. But, there is always room for more! Let's see how many new members we can add to our family before the 2019 VLC!
Grandmother of a child with CF
Bonnee began volunteering for the Florida Chapter, South Florida Office of the Cystic Fibrosis Foundation when her granddaughter Delaney was diagnosed with CF seven years ago. Since then, she has chaired or co-chaired numerous events, including the Great Strides Miami walk, Miami’s Big City Affair, Miami’s Night for a Cure, and Kick CF with Bryant McKinnie and Friends. She is a staunch CF advocate, and has attended the Foundation’s annual Florida CF Day and March on the Hill. Bonnee has been a member of the Foundation’s Miami-Dade Advisory Board since 2011, and currently serves as its chairperson.
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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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