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.
The 24th annual Ultimate Golf Experience brought together a standout array of entertainers, guests, and friends of the Cystic Fibrosis Foundation for a premier golfing event to raise funds in the fight against cystic fibrosis.
Published on December 4, 2018
More than 200 supporters gathered Oct. 24-28 in Naples, Fla., for the 2018 Ultimate Golf Experience (UGE), which raised more than $750,000. Among the guests were celebrities who have remained dedicated to the fight against CF for several decades -- including Grammy Award-winning comedian Lewis Black and acclaimed country music singer and songwriter Victoria Shaw.
Black, the Cystic Fibrosis Foundation's Celebrity Ambassador and UGE host, became involved 24 years ago at the request of comedian Rosie O'Donnell, whose nephew has CF. Since then, he has attended every UGE event and is an advocate for those living with the disease, bringing numerous friends from the entertainment industry to perform with him over the years.
Shaw, who has been involved with the CF Foundation since 1998, has been performing at UGE for nearly 11 years and sang, “One Heart at a Time,” a song she wrote for the Foundation, along with Georgia Middleman and Gary Burr. Shaw and Black were joined by other entertainers and celebrities, including comedians Kathleen Madigan and Jeff Stilson who performed light-hearted comedy for the audience.
“We are grateful for the unyielding support of all those who continue to turn out to UGE each year, helping advance our mission and make a difference in the lives of those living with CF,” said Marc Ginsky, executive vice president and chief operating officer of the CF Foundation. “We have made a lot of progress, but we will not be satisfied until every person with CF is helped -- until we find a cure.”
The night was filled with poignant remarks from the CF community, including from Wells Clark, an 18-year-old living with CF and UGE ambassador, who gave the Bid for a Cure speech with his father, Perry. Perry conveyed how significant UGE is to their family and their hope for the future. Another special moment came when Robin Treadway, UGE auctioneer, was awarded the 2018 Champion for a Cure award for donating his time and talent to the Foundation for 30 years. The evening ended with karaoke hosted by Matt Iseman, host of the TV series, “American Ninja Warrior,” and Matt Rogers, country singer, TV show personality, and father of a person with CF.
A very special thank you goes out to the following corporations and individuals for their support of this event:
The 25th annual UGE event will be held Oct. 16-20, 2019 in Pinehurst, N.C. For more information, please contact Helen Johnson at firstname.lastname@example.org or Leah Bell at email@example.com.
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