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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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 Cystic Fibrosis Foundation presented five outstanding members of the CF community with awards at the 2019 Volunteer Leadership Conference. These included the Tomorrow's Leader Award, the Jena Award, the Alex Award, and the Dream Big Award.
Published on April 9, 2019
On March 29, the Cystic Fibrosis Foundation honored several inspiring individuals at the 16th annual Volunteer Leadership Conference (VLC) by presenting them with awards for their efforts to help advance the Foundation's mission. Their commitment to help
those living with CF and their spirit of collaboration underscored this year's conference theme, teamMATEs: Stronger Together.
The 2019 Tomorrow's Leader Award was presented to not one, but two individuals in the CF community. The first award recipient, Harris Markowitz, became involved with the Foundation 10 years ago when a friend's daughter was diagnosed with CF. After becoming
the chair of the Young Professional Leadership Council in Greater New York, he was one of only a few volunteers asked to help build the Tomorrow's Leaders program nationwide. Over the past few years, he has dedicated his time working with volunteers
and chapters from across the country to help start their individual programs.
The second award recipient was Jessica Coniglio, a long-time volunteer who first got involved through the Guys and Dolls Finest event in Charlotte, N.C. After joining the Finest event committee, she served on her chapter board, became its chair, moved
onto the leadership council, and now serves as the Tomorrow's Leaders Leadership Council Chair. She has helped raise $120,000 to support the Foundation over the past decade, serving as a supportive volunteer and an incredible teamMATE.
The Jena Award, named for Margarete and Marc Cassalina's daughter, Jena, who bravely lived with cystic fibrosis until the age of 13, acknowledges the contributions of someone without a personal connection to CF who has shown persistent dedication
to the fight against the disease. This year's recipient was Sue Hook.
Although Hook does not have a direct family connection to CF, she has made helping those with CF her life's mission. At 15-years-old, Sue learned a boy in her neighborhood had CF, and decided to form a club dedicated to conquering CF, called “The
Conquerettes.” For the last 50 years, she has been a powerful voice in support of those living with CF, attending nearly every event hosted by the Orange County Chapter and surrounding local chapters. She has held numerous leadership positions,
including 30 years as the Orange County Gala Chairman. She is responsible for helping raise millions of dollars for the Foundation.
The Alex Award is presented in honor of the late Frank Deford's daughter, Alex, who passed away from cystic fibrosis at the young age of
8. This award goes to a person with cystic fibrosis who reflects perseverance, tenacity, and courage in every aspect of their life. This year's recipient, Somer Love, has devoted her life to giving back to the CF community and helping others
pursue their dreams.
From the time she was diagnosed with cystic fibrosis at 11-months-old, her family joined the fight to find a cure, and helped establish the Cystic Fibrosis Foundation chapter in Utah. She started the Love to Breathe organization dedicated to spreading
CF awareness and love across the globe. Through coaching young people about the importance of doing daily treatments and supporting her local chapter, Love remains a source of inspiration and strength to many.
The Dream Big Award, which recognizes someone who has made an enormous difference in the fight against cystic fibrosis, was given to Bernie Willett. After losing two sisters to the disease 50 years ago, he became passionate about advocating for people
with CF through participating at March on the Hill and at local advocacy events in New England.
Bernie also brought American Airlines to the CF Foundation as a corporate supporter, helping to establish the American Airlines Celebrity Ski event, which has raised over $30 million since it began 35 years ago. He also secured placement for the Cystic
Fibrosis Foundation for the American Airlines Kids in Need program, which contributes hundreds of thousands of dollars each year. Although Willett retired from American Airlines four years ago, he continues to support local chapter events, secure
national sponsors, and leverage relationships to help benefit the mission of the Foundation.
Congratulations to all of this year's honorees!
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