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.
The Cystic Fibrosis Foundation has awarded the 2016 Impact Grants to individuals or organizations making a positive impact on the cystic fibrosis community.
Piper Beatty Welsh, J.D., M.P.A.
January 19, 2017
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On behalf of the Foundation, I am pleased to announce the first recipients of the Cystic Fibrosis Foundation Impact Grants, a program that provides up to $10,000 per year to individuals or organizations that benefit the cystic fibrosis community. All applications were reviewed by the
CF Adult Advisory Council, an external review panel made up entirely of adults with cystic fibrosis. The results were every bit as inspiring and innovative as we have come to expect from all of you.
Ultimately, seven exceptional applicants received grants, from programs devoted to helping people with CF achieve their personal fitness goals, to supporting and educating CF spouses and caregivers. As a person with CF, I was particularly excited to see such dynamic proposals, and I look forward to continuing to grow the Impact Grant program in the years to come. It is therefore with great pleasure that I announce the 2016 Impact Grant awardees. The Foundation is proud to support these organizations in their important missions to benefit our community.
The Cystic Fibrosis Lifestyle Foundation (CFLF) is a nonprofit that helps people with CF maintain a healthy lifestyle. Through its
Recreation Grant Program, the CFLF awards financial assistance to children and adults with CF who demonstrate a financial need and personal desire to improve their physical well-being. The Impact Grant will allow CFLF to help people with CF stay physically active through gym memberships, yoga classes, swimming lessons and more.
"As an adult with CF, I see just how important it is to make time for exercise, just like I would any other treatment or therapy. Now, in my seventh year of running the Recreation Grant program, I have seen firsthand how drastically a person's physical and mental health can be altered by removing the obstacle of financial burden that comes with paying out of pocket for things like gym memberships or yoga classes. People with CF who are looking to better their lives through exercise are welcome to apply for a Recreation Grant." - Erin Evans
The United States Adult CF Association (USACFA), a nonprofit run by adults with CF, offers the community an opportunity to exchange medical and non-medical information through its quarterly national newsletter, CF Roundtable. The USACFA will use the Impact Grant to cover the price of printing, mailing, distribution and website upkeep.
"The U.S. Adult CF Association has been publishing [the] CF Roundtable newsletter since 1990! It's written by adults with CF, for adults with CF. Our motivation has always been to link adults to each other by getting them to share their experiences with CF, their challenges, their successes and pitfalls. We hope to engage more adults within the CF community -- including those with transplants or [those] awaiting them and especially young adults who are transitioning to adult care -- through our CF Roundtable newsletter, website resources, social platforms and events, such as our awards programs and speaking events." - Stephanie Rath
To contribute articles to the quarterly CF Roundtable or blogs for the website, email
Project CF Spouse is a nonprofit dedicated to educating and supporting spouses of people with CF. The Impact Grant will be used to grow the 150-person group, which started on Facebook, into an organization that will provide educational resources and access to other spouses and people with CF.
“Being married to someone with CF presents unique challenges that only other CF spouses can understand. The idea for Project CF Spouse stemmed from several conversations that I had with some CF moms about the supportive relationships they had formed with fellow CF parents. I wanted to develop this type of support system for my fellow CF spouses. The biggest thing that I am looking forward to this year is just getting everything up and going!” - Megan Barker
The sINgSPIRE program, through Breathe Bravely, focuses on the art of singing as a way to combat the effects of CF. With the Impact Grant, sINgSPIRE will provide 15 students 10 weeks of free, private voice lessons with a qualified voice instructor, who will work on strengthening participants' respiratory systems and improving their self-awareness and confidence.
“Music and singing have played an integral part in my management of cystic fibrosis. I have inherently felt the benefits of a life dedicated to the art of singing and want to share that with others with CF so that they, too, may know how powerful their voice can be. Singing has given me a deep self-awareness of my CF … and it has given me the tools to help understand the power in finding my maximum breath potential and voice.” - Ashley Ballou-Bonnema
If you or your child would like to participate, go to
Empower Project, part of Attain Health, is an online health coaching and personal training program for individuals with CF. Each participant receives one-on-one time with an integrative health coach and personal trainer, and the program includes weekly check-ins, video conferences and a specific workout plan that coincides with individual needs.
“We are so excited to work in partnership with individuals in the CF community who are motivated to create positive change in their lives through bolstering their exercise, mindfulness and nutrition goals. Seeing individuals who have faced such adversity in life remain motivated to achieve their greatest health and ultimately succeed in obtaining their goals will be so rewarding for us. We cannot wait to engage in the process of change with individuals who we see as warriors.” - Kat and Mike Porco
Miles for Cystic Fibrosis will use its Impact Grant to support Project BreatheStrong, which provides grants for children and adults with CF to take part in activities that will improve their mental and physical heath. In addition, the Impact Grant will be used to provide information on nutrition and exercise to the CF community through the
Miles for CF website, social media and other communications.
“This Impact Grant will make a huge difference in our ability to expand our program throughout the CF care centers in Georgia. We started in one pediatric clinic and now look forward to offering our program in all the CF clinics in the state. We have connected with a few nonprofits in other parts of the country who are also engaged in promoting exercise and recreation for people with CF, and hope to learn from each other to increase our effectiveness and our reach." - Rebecca Penuel
Children and adults with CF, who are treated at a clinic in Georgia and are interested in getting help in paying for a physical activity of their choice can ask their CF social worker to give them a BreatheStrong application and help them submit it.
Continuing Education for Caregivers/Individuals with CF supports individuals affected by CF through educational workshops that concentrate on various aspects of the disease. The Impact Grant will help the group form a nonprofit that will support people with CF in following their treatment schedules and share information about how they can take care of themselves, or support someone else as a caregiver.
“With this grant, we hope to establish a community of families with CF, and with parental input, provide educational opportunities on topics of need and interest. We are targeting parents or caregivers of those with CF as well as teens or adults with CF. We plan to offer at least six workshops over the course of the year, bringing in speakers on a variety of topics. We look forward to each workshop and to meeting other parents with children with CF, and hope to provide support to others through the workshops and networking opportunities." - Jennifer Webber
For more about this project, email
Congratulations to all of the recipients!
(Note: The 2017 Impact Grant application process will begin in April. For more information, please visit the
Impact Grants page, and check the CF Community Blog in March for additional updates.)
Piper Beatty Welsh, J.D., M.P.A.
National Strategic Collaborations Liaison
Piper was first diagnosed with CF at 6 weeks old in 1981, and has since been the survivor of two double-lung transplants. Piper attended Emory University, received her J.D. from Columbia University Law School and then went on to earn her master's in public administration from New York University's Wagner School of Public Service. She is the owner and author of the popular CF and transplant blog, A Matter of Life and Breath, and lives in Colo. with her husband and puppy.
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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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