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.
Hayden Siler might look like your average third grader -- the 8-year-old likes to dance and loves being a big sister. Deep in her heart, though, Hayden is an artist.
Published on January 22, 2015
For nearly two years, Hayden, who has cystic fibrosis, has created one-of-a-kind abstract paintings, which she sells at auctions and art shows to benefit the Cystic Fibrosis Foundation.
“I get really excited when people buy my paintings. Sometimes I jump up and down,” Hayden said. “When people buy the paintings, I know they are helping me and kids like me.”
To date, she has sold 17 works and has raised more than $6,500 to help support the search for a cure.
Talented Beyond Her AgeAccording to Hayden, it takes “20-something” minutes to create each piece-which is nothing compared to the amount of time she must spend on treatments just to stay healthy. Every day, Hayden completes an hour-and-a-half of breathing therapies and takes dozens of pills to help clear her lungs of thick, sticky mucus.
“Doing my treatments is annoying, but if I don't do them, I'll get sick,” Hayden said, adding, “I'd rather be painting.”
Hayden's work has caught the attention of numerous professional artists in the Oklahoma City area, including former NBA star Desmond Mason. Mason opened a studio and gallery in Oklahoma after retiring from professional sports, and has shown his work all over the country. Hayden and Desmond collaborated on a piece that later sold for $2,500.
Hayden says learning from artists like Mason has helped her discover new techniques.
“Sometimes I use a spatula. Sometimes I get a bucket of water and dump it on the painting, then let the paint run,” Hayden said. “I like trying new things when I paint.”
Determined To Make A DifferenceHayden's mom Alyssa said she's proud of Hayden for following her dreams and for showing compassion to so many in the CF community.
“It was all Hayden's idea to have a fundraiser centered on her art,” Hayden's mom, Alyssa, explained. “It's become her mission to help find a cure. It's a lot for an 8-year-old to do, but she's determined.”
It is the same feeling of determination that drove Alyssa to get in touch with the Cystic Fibrosis Foundation when Hayden was first diagnosed. “When the doctors told me that CF is a life-shortening disease, something in me snapped,” she recalled. “I wasn't going to accept a shortened life for my daughter. I knew then that I needed to be part of finding a cure.”
She and her husband immediately contacted the Oklahoma Chapter of the Cystic Fibrosis Foundation to ask how she could get involved. Today, they consider the chapter's staff part of their family.
“Because of the Foundation, my husband and I know we have the power to change the course of this disease, and give our daughter a real future,” Alyssa said. “I think Hayden knows that, too.”
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