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.
On Mar. 11, the Cystic Fibrosis Foundation presented the Alex, Jena and Dream Big Awards to leaders in the CF community for their dedication to the Foundation's mission of finding a cure.
Published on April 1, 2016
More than 500 CF Foundation volunteers and community members looked on as Joe O'Donnell, one of the CF community's most visionary and passionate leaders, received the first Dream Big Award, which recognizes individuals who dare to push the boundaries of what is possible in order to advance the mission of the CF Foundation. Joe was honored as a volunteer and fundraiser who has made a remarkable difference in the fight against cystic fibrosis.
Joe and his wife, Kathy, became involved with the Foundation in the 1980s in honor of their son Joey who had cystic fibrosis. They began The Joey Fund as a tribute to their son and to honor those fighting CF today. For the last 30 years, Joe has made a lasting impact by encouraging philanthropic giving. As the chair of two of the Foundation's most successful major gift campaigns, Milestones to a Cure and Milestones II: Accelerating the Search for a Cure, Joe garnered hundreds of millions of dollars in support of the fight against CF. He began numerous events, such as the annual Joey O'Donnell Film Premier and the famous Hot Dog Safari, to make a difference in the lives of people with CF.
Rosemary and Jim O'Neill were presented with the 2016 Jena Award, named for Jena Cassalina, the daughter of Marc and Margarete, who lived courageously with CF until the age of 13.
Rosemary and Jim received the award, presented by Marc and Margarete, for their dedication as 20-year volunteers for the Foundation. Their strong commitment to curing cystic fibrosis and supporting people with CF resulted in more than $1 million dollars in philanthropic support. They began their journey with the Foundation by walking at a Great Strides event to support their neighbors, whose two children have CF. They have been party hosts, committee chairs, title sponsors and major donors for the Western Pennsylvania Chapter event A Passion for Wine, tirelessly working at engaging new sponsors and auction items and serving as committee members each year.
“The dedication that Rosemary and Jim have toward the Cystic Fibrosis Foundation and my family comes from their hearts,” said Janet Brendel, the O'Neill's neighbor and mom of two children with CF. “The Western Pennsylvania Chapter and my own family have greatly benefited from the O'Neill's generous spirits and feel they are well deserving of the 2016 Jena Award.”
Andy Lipman received the final award of the evening, the Alex Award. Each year, the Alex Award is presented to a person with CF who is a role model to others with the disease and embraces perseverance, showing unflagging courage in the face of this challenging disease. The award, presented by Frank Deford, chair emeritus of the CF Foundation Board of Trustees, is in honor of Frank's daughter, Alex, who passed away from CF at the age of 8.
“He is an absolute dynamo and a model whom anyone with CF can look up to,” Frank said of Andy in a video presenting the award.
Andy is the chair of A Wish for Wendy's Softball Challenge, an event supporting the Foundation's Georgia Chapter in its sixteenth year that has raised more than $2.7 million. Andy is also a member of the Foundation's Adult Advisory Council (AAC), supporting the Foundation's mission to find a cure and support people with CF today.
“There are 69,999 other people that have this disease worldwide and I want to help them, I want to show them we can live a longer life,” said Andy.
You can register to watch the entire Volunteer Leadership Conference live stream, including the annual awards dinner.
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