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 Cystic Fibrosis Foundation took the Volunteer Leadership Conference (VLC) on the road this year and hosted the event in Dallas on April 7 and 8.
Published on April 20, 2017
More than 600 attendees traveled to this two-day annual conference to celebrate the impact and the power of volunteers when they work together and to highlight important CF Foundation achievements from the past year. The 14th annual Volunteer Leadership Conference (VLC), themed “teamMATEs (Make Adding Tomorrows Easier) for a Cure,” was the largest volunteer conference in the Foundation's history and saw many firsts. Co-chaired by Ginger Birnbaum and Mike Beatty, it was the first VLC to be held outside of the Washington, D.C. area, and it was the first time that so many people attended in person, with hundreds more tuning in online via live stream. Mike remarked, “I guess it's true what they say, everything is bigger in Texas.”
On day one of the conference, Drs. Michael Boyle and William Skach unveiled the latest developments in CF research at a session called, “Advances in Research: Leaving No One Behind,” which was a medical update showcasing the tremendous progress being made for those living with CF. They talked about their goal to ensure that no one with CF -- regardless of how rare their mutation may be -- will be left behind. Specifically, the doctors discussed the promise of transformational scientific advancements, such as gene editing.
Following was Marc Ginsky, the Foundation's executive vice president and chief operating officer. Having traveled to nearly every Foundation chapter in the country, he shared his first-year perspective, as well as what he hopes to achieve in the coming year.
For many, the highlight of the day was the “Our CF Story” panel, led by Linda Bowman, an adult with CF and this year's winner of the Alex Award. She and her husband, Mike, courageously revealed how CF has impacted their lives and their marriage, discussing the challenges and the triumphs they've experienced in the face of such a tough disease.
Also on the panel were Mara Cray, a young adult with CF, and her mom, Sharon. The effervescent mother-daughter duo talked about Mara's transition to college and Sharon's lessons in “letting go.” They were joined by Paige Montgomery and her siblings Katie Lyons and Charlie Nettles, who shared their journey as a family when Paige received a CF diagnosis as an adult. The day concluded with the annual awards dinner, celebrating outstanding volunteers and corporate sponsors.
On day two, attendees enjoyed a range of break-out sessions, featuring best practices in fundraising, social media, and advocacy efforts. New this year were the “Medical Hot Topics” sessions, during which attendees both in Dallas and via the live stream could learn about lung transplantation, advances in correcting CFTR mutations, Compass, and clinical trials.
For those who were not able to attend in person, the Foundation live-streamed the entire event, including all of the break-out sessions and Medical Hot Topics. If you missed a portion of the conference, or would like to view any session again, watch archives of the live-streamed videos on the CF Foundation’s YouTube channel.
Learn more about this year's VLC award recipients.
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