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.
Julianne Golinski doesn't set limits. She gives 110 percent. Always.So when the 22-year-old, who was diagnosed with cystic fibrosis at birth, developed CF-related diabetes earlier this year, she didn't let the condition faze her.
Published on October 1, 2013
“I've taken a very nerdy approach to it,” Julianne said. “I've been graphing my sugars and insulin and following trends.”
That so-called “nerdy” approach exemplifies Julianne's zest for life and learning.
In May, she graduated from Tufts University with a degree in biopsychology. In July, she began working in a research lab at Massachusetts General Hospital where she is studying the effects traumatic brain injuries -specifically concussions - have on the mind and body.
For Julianne, the career choice is perfect.
“I have a curious mind. I love asking questions, finding facts and testing things out,” Julianne said. “I'm especially looking forward to the area of research I'm in - the brain is fascinating to study.”
Inspired by Medicine
Julianne attributes her interest in medical research to the disease she has lived with her entire life. CF is a life-threatening, genetic disease that causes a buildup of mucus in the lungs and pancreas and requires very specialized care.
To stay healthy, Julianne must complete two hours of breathing treatments and take multiple medications each day.
“I have this drive in me to excel at everything I do and it's no different with my health,” she said. “I have always been very diligent about treatments. It never occurred to me that not doing treatments was an option.”
Growing up, she had regular visits with CF doctors who encouraged her to follow her dreams.
“They were like a second set of parents to me,” Julianne explained. “From a very young age I wanted to be a doctor because I was so inspired by what my doctors did to help other people.”
Julianne's interests began to shift from medicine to research when she enrolled in a volunteer research program though her high school. She was paired with a scientist at Case Western University and began assisting with neural stem cell lab work.
Her work focused on how the body uses natural stem cells to repair damage caused by multiple sclerosis. She eventually developed her own project, which received numerous accolades at science competitions in the United States and abroad.
“That was really the start of my science career,” Julianne said. “It was apparent when I was 14 that I had a knack for research. I stuck with it because I love every step of the research process from the moment I walk into the lab until the time I leave.”
Focused on the Future
Eventually, Julianne hopes to pursue a Ph.D. in cell biology. For now, though, she is focused on enjoying all of the experiences that come with a first job, like living on her own and making new friends.
Julianne also hopes to use the transition into adulthood to raise awareness about cystic fibrosis. She hasn't told many people that she has CF; however, she believes that talking about her disease is an important step forward in life.
Julianne will take that leap this fall by helping a friend who is participating in CF Cycle for Life meet his fundraising goal by speaking to others about the disease. She hopes her story will inspire people to give - and get involved.
“Being more vocal about my CF is going to be a big change, but I'm ready for it,” Julianne said. “As someone with CF, there's more I can do to help support the search for a cure. Getting involved with the CF Foundation's cycle program and Great Strides is a great way to do that, and I'm really looking forward to it.”
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