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.
As a professional vocalist, for most of my life I tried to hide my CF. But, after opening up about my disease and creating a program to help others through singing, I realized just how powerful my voice really is.
February 15, 2019
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Singing has always been a huge part of who I am, and so has cystic fibrosis. But, for much of my life, I felt my identities as a singer and someone living with CF could never intersect. I remember the frustration of having a passion for singing -- something that filled my soul and gave me so much happiness -- while living with a disease that seemed to fight against it. However, I also realized that while CF limited my singing ability at times, every phrase I sang also allowed me to become increasingly more aware of my own respiratory system. Singing helped me to be “in tune” with my body and how it all felt even if the slightest thing was off.
So, instead of focusing on how CF limited me, I decided to see how singing could positively impact my life with CF and carried on with my dreams to become a professional vocalist by pursuing graduate school. But, even when I decided to take the next step in my education, I continued to hide my CF because I didn't want special accommodations or to be seen differently by my peers.
Although I began to appreciate my life as both a singer and someone living with CF, I didn't think the world would have the same positive outlook.
At the age of 27, with lung function of 25 percent, I thought my song had ended. My health began to decline, and it was then I realized that I could not hide my CF anymore. I was hesitant to open up to others around me, but the support I received was remarkable. After months of tears, fighting to breathe, and the incredible care of my doctors, nurses, and pharmacists, with a lung function of 54 percent, I stood on a stage and gave my final graduate voice recital. Two days later, I graduated with my master's degree in vocal performance.
I'm continuously amazed at the power of singing. Singing wasn't just a passion, but a catalyst for connection and building empathy and understanding. Singing helped me physically, but it also provided an outlet and support system that I never knew was missing from my life. I remember thinking, “What if I could share the art of singing with others who also had CF? Could singing positively impact their life both mentally and physically as it has my own?”
It was from this realization that I decided to create sINgSPIRE -- a program to combat the effects of cystic fibrosis through the art of singing. Through sINgSPIRE, individuals with CF -- at all levels of singing ability -- from around the world are paired with professional voice instructors for private voice lessons via video call to work on building respiratory strength, breath management skills, respiratory and body awareness, and utilizing those skills to sing.
Around this time, the Foundation launched the Impact Grants program, which provides grants for programs that benefit the CF community. I excitedly applied for the program and sINgSPIRE was graciously awarded an Impact Grant, allowing me to launch my first session in 2016. Today, sINgSPIRE has had a profound impact on the lives of 41 students … and counting.
After creating sINGsPIRE and seeing the effect that it has had on the confidence, happiness, and health of others, I realize just how important it is to share your voice -- and that your life's purpose comes from combining your passion with your self-truth, whatever that means to you. Anything is possible when you find your own voice.
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Adult with CF
Ashley Ballou-Bonnema is a professional vocalist and private voice instructor. She serves as the executive director of Breathe Bravely, an organization passionate about giving voice to CF. Diagnosed at 1-month-old with CF, Ashley is a passionate advocate for the CF community. Ashley was inspired to bring her life as a musician and life as an individual with CF together through a program called, “sINgSPIRE,” an innovative approach to combating CF through the art of singing. Ashley and her husband, Mark, along with their dogs, are lucky to call Sioux Falls, S.D. home.
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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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