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.
An Impact Grant from the CF Foundation allowed my program, the Mothers' Retreat Program, to provide a space for moms of children with CF to get together and learn new approaches for addressing self-care, anxiety, and depression.
May 11, 2018
Healing Pain With Love
The Challenges of Sharing My Disease on Social Media
Every day, I am amazed at how many people have touched my life in so many ways.
Perhaps one of the most powerful examples is The Cody Dieruf Benefit Foundation's Mothers' Retreat, which began after my daughter, Cody, passed away from cystic fibrosis in 2005. Although the retreat is just one way in which The Cody Dieruf Benefit Foundation
supports CF families, we wanted to create an opportunity that I did not have -- for mothers of children with CF to come together and form a community.
With the help of the Cystic Fibrosis Foundation's Impact Grants program, I was able to accomplish this in September 2017, during our most recent retreat in Montana. Over the course
of three days, the women who participated created a community as we shared our journeys as mothers and learned how the stress of caregiving affects our children, our families, and ourselves.
But how, you might ask?
Nestled in the mountains on the Gallatin River, 20 women came together for a weekend away from the responsibilities of work, family, and caring for a child with CF.
Upon arriving, mothers rode horses through the beautiful trails of Big Sky, Montana. Then, that evening, each mother brought something that represented a significant aspect of their child and introduced themselves. It was heartwarming and surreal.
We hung onto every word as each mother bonded with each story that was told. After introductions, we sat by the fire and laughed and cried and continued to get to know one another.
We expressed ourselves by designing our own jewelry, writing, dancing, singing, practicing yoga, and using a method of self-discovery that involves the creation and intuitive analysis of pictures. These different activities helped moms open up about their
own walk with cystic fibrosis, whether it involved challenges related to siblings, teenagers, doctor visits, financial hardships, depression, or relationship issues.
As we closed the retreat, mothers affirmed the value of the experience by sharing how the program had helped them as individual:
The support and community we created has continued past our time together last September.
We share the highs and lows of our lives and support one another in our social media group. When a child is sick, we support each other; when a mother is feeling lost, we find her; when a mother does something for themselves, we show praise. Sometimes,
it takes many years for a mom to realize that she is important in the caregiver world.
Although our journey with CF had been stressful and lonely, I would do it over again. Cody's life has touched mine beyond words, as she lived it with such joy and determination. By providing such an important outlet for hope and support, I know I was
able to honor her legacy and make her proud.
And as for me, I am finally connecting with the community of mothers I needed for so long.
Mother of an adult with CF
Ginny is the founder of The Cody Dieruf Benefit Foundation. Although she lost her daughter, Cody, to cystic fibrosis at the age of 23, she and her family have indeed found a new perspective on life and turned tragedy into a legacy of life. A longtime resident of Bozeman, Mont., Ginny continues, even after the death of her daughter, to offer hope, passion, and strength to those with CF and their families through her foundation. She hangs on to the belief that one day, a cure will be found.
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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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