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.
Last updated on January 8, 2013
Beneath the glowing lights of the city that
never sleeps, more than 550 participants gathered for the Greater
New York Chapter - Manhattan's ninth annual Breath of Life Gala in
The event, which raised $1.6 million, featured live and silent
auctions, a celebrity comedy skit and many New York notables. But it was a
touching speech by an adult with cystic fibrosis that really brought the night
Hope and Optimism
J. Negrycz, chapter board member, honoree and Breath of Life Award recipient
with his wife Eileen and their granddaughter Sara.
Piper Beatty, 31, who
has CF and is a long-time volunteer and devoted friend to the CF Foundation
delivered the evening's powerful Bid for a Cure speech. Speaking from
her heart, Piper discussed the significance of Kalydeco™, the first drug to
address the underlying cause of CF in four percent of the population.
Though the FDA's approval of the drug does not impact her, she is confident
that the breakthrough treatment will change the lives of people with the
“It's our time,” she said. “We're so close to finding a cure. We
can do this. We can all do this.” Piper's words inspired guests to donate more
than $130,000 during Bid for a Cure.
As she spoke, Piper was surrounded by a number of famous
New Yorkers including Lonnie Quinn, “CBS 2 News” chief weathercaster and board
member of the CF Foundation's Greater New York Chapter - Manhattan; Heather
Thomson and Carole Radziwill, stars from Bravo's hit series, “The Real
Housewives of New York City”; Michael Kay, YES Network's voice of the New York
Yankees; and Ali Wentworth, author, comedian and actress most famous for her
role as Jerry's girlfriend in the classic Seinfeld episode “Soup Nazi.”
The New York
City skyline was front and center at the 9th Annual Breath of Life Gala at
Cipriani 42nd Street.
The Gala also offered
an opportunity to recognize and celebrate those who generously support the CF
Foundation. Gary J. Negrycz, vice president of Turner Construction, honoree, and
chapter board member, was the recipient of the 2012 Breath of Life award. This
prestigious award honors exceptional individuals for their above and beyond
commitment, leadership and dedication to the fight against CF.
Unmatched Auction Items
Finally, guests took part in
live and silent auctions led by Kay, Radziwill, Thomson and Wentworth. The live
auction included tickets to the Grammy Awards and the Kentucky Derby and suite
tickets to the New York Knicks vs. Miami Heat game.
The silent auction
featured a wide range of items, like jewelry, tickets to exclusive shows and
events, sports memorabilia and exclusive getaways to Nantucket and Zurich,
Together the auctions raised nearly $100,000 towards the
search for a cure for CF.
The Greater New York Chapter - Manhattan would like to
thank the event chairs and co-chairs:
Its generous sponsors:
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With more than 70 chapters and offices across the country, there are plenty of ways to get involved.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
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