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.
In just four short years, Karen Sani has become the ultimate CF Foundation teamMATE at the Northeastern New York Chapter. She is an inspirational volunteer who motivates everyone around her to support those with cystic fibrosis.
April 29, 2016
Listen, Learn and Engage
#morethanCF: Time is on Your Side During Airway Clearance
As a writer, I have worked to capture stories in the nonprofit space my whole career and have met many amazing volunteers along the way. Although they come from all walks of life, they share a common trait: a selfless dedication to help others in need. The CF community volunteers are a particularly impassioned group, ready to do whatever it takes to accelerate the search for a one-time cure for all those living with CF.
One CF volunteer who really stands out is Karen Sani, of Saratoga Springs, New York. During the four years she has volunteered with the CF Foundation's Northeastern New York Chapter, Karen has made a strong mark -- taking on myriad responsibilities, from writing letters to donors to supporting social media communications and preparing for events, to name just a few.
“She comes into our office almost daily and helps out wherever can,” said Donna Clark, executive director of the chapter. “From loading a van with event supplies to route marking for CF Cycle for Life, she embraces everything that we do!”
What makes Karen's volunteerism truly unique is that unlike many volunteers, who give their time because they are supporting a cause that affects their lives personally, Karen gives to CF out of the goodness of her heart. She initially became versed in the CF Foundation's work when, several years ago, her youngest son, Ben, was experiencing some health issues and doctors were concerned that he might have CF. When the test results came back negative, that didn't stop Karen from wanting to help those with this devastating disease. She said, “What I learned just weighed on my heart.”
Karen immediately contacted Donna. It turned out that Karen not only wanted to volunteer, she wanted to make a financial contribution as well. In less than a week from learning about cystic fibrosis, Karen and her husband, Farzad, had made a major gift to the CF Foundation's Northeastern New York Chapter as part of the Foundation's Milestones II: Accelerating the Search for a Cure campaign.
Karen is the kind of donor who not only writes a check but also makes others, such as high-profile business associates, aware of CF. She often accompanies Donna to meet potential sponsors and donors because she has no fear of asking for donations. She and her husband also personally contribute to their local events, such as the 65 Roses Gala, Great Strides and CF Cycle for Life, which she often helps plan.
Last year, Karen became a volunteer advocate when she attended the 2015 March on the Hill in Washington, D.C. But as she puts it, she really feels like she advocates every day for the CF community. She talks about the Foundation to whomever will listen -- from hotel employees to people who sit next to her on airplanes.
“I believe that if and when I can spread awareness, I should. Being an advocate never stops,” Karen explains. “Every time I walk into my local chapter, I feel excited. I have been a part of other nonprofits, but none have touched my heart like this one. I believe that one day we will find a cure for CF.”
Former Writer/Editor, Cystic Fibrosis Foundation
Dora previously worked at the Foundation as a writer and editor. During her tenure, she loved to listen to others share their memories and experiences, and consumed storytelling in all of its different forms. She constantly looks for the uniqueness in everyone's story. Dora has a B.A. in communications from the University of Maryland, College Park, and an M.S. in public policy and administration from the London School of Economics. Born in Budapest, Hungary, Dora was raised mainly in the Washington, D.C., metropolitan area where she currently resides today.
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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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