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.
Caring for somebody with CF used to be a lonely journey. But that changed after I attended the first Volunteer Leadership Conference (VLC). I have attended the conference every year, and this year as a co-chair of the 15th VLC, I'm welcoming everybody to livestream it so we can share and learn together.
March 5, 2018
This Year Join March on the Hill Virtually
My Experience With a Food Elimination Diet
On March 15 I am going to get up at 4 a.m., drive 45 miles on the country's busiest freeway (the infamous 405), from Orange County to Los Angeles International Airport, work my way through security, and squeeze my 6'4” frame into the ever-shrinking space
of a middle seat on an overcrowded airplane, where I will be held captive for five hours as it travels to Washington, D.C. And … I absolutely can't wait to do it!
Why, you ask? Because I am headed to my favorite event of the year -- the Cystic Fibrosis Foundation's Volunteer Leadership Conference (VLC), which will be held March 16-17.
Let me back up a bit. I have been involved with the CF Foundation for 31 years, ever since my daughter, Stacy, was diagnosed with CF at just 3 months old. I got involved because I felt that it was the most important thing I could do to give Stacy the
best and longest life possible. Becoming involved with the Foundation gave me comfort that others were working passionately to help my daughter and all those living with this disease. But, it was still a very lonely journey because even though others could empathize, very few people could fully understand what Stacy, and our family, were going through on a daily basis. It was lonely, that
is, until I attended the first VLC 14 years ago. There I was, among several hundred other dedicated volunteers -- volunteers who were just as motivated as I was to put an end to this disease. They didn't all have CF in their families, but they all
had people with CF in their hearts.
That first VLC changed my life. I came home with renewed enthusiasm, energy, and hope, as well as a new group of friends who, over the years, have become like family. VLC is a place where we feel safe talking about our true feelings, expressing our fears
for our loved ones' futures … and telling friends about their accomplishments and setbacks.
I have attended every VLC since that first one -- all 14 of them -- and every year I learn new things about the state of CF research and fundraising best practices. And, of course, every year I close down the hotel bar, hanging out with my great friends
from around the country, until they literally kick us out.
This year I have the honor of being co-chair of VLC, along with my new pal, and hero, Bonnee Binker. The theme of this year's conference is: teamMATEs: Together Until It's Done. That's because we are all in this together, we have come so far together,
and we will put an end to this disease together!
So, how can you be a part of VLC? We have some great sessions planned this year, and with just your computer or smartphone, you can livestream the whole thing. I'm thrilled that this year we will be streaming more content than ever, and sharing activities
between sessions on social media, so you can get a flavor for the social aspect of the conference.
Sign up for the livestream here, taking place on March 16 and 17.
As always, the medical updates will be a highlight. We have all heard about the new medications to correct the basic defect in CF. But, we will learn
more about what their development really means to people living with the disease today and about the Foundation's plans to find a cure for EVERYONE with CF during the Update on Research: Accelerating Progress session.
There will be several other medical sessions throughout the conference focused on specific issues that are relevant to various subgroups of the CF population, like the Lung Transplant Initiative and Advances Toward Treating CF Complications sessions.
We will also learn about new fundraising strategies and initiatives in several breakout sessions. We'll also spotlight the new young professionals program, Tomorrow's Leaders,
and celebrate the 30th anniversary of Great Strides.
Attending the Volunteer Leadership Conference in person is wonderful. But, if you can't attend, the next best thing is to watch the livestream of the event. Whether you are there physically or virtually, I am confident your experience at VLC 2018 will
be informative, motivational, and very meaningful like it always has been for me.
Father of an adult with CF
Paul has been involved with the Cystic Fibrosis Foundation since his daughter, Stacy, was diagnosed with CF 31 years ago. He is the chairman of the Orange County Chapter’s Volunteer Board. Paul serves as co-chairman of the Orange County Chapter’s largest fundraising event, Pipeline to a Cure. An avid hiker, Paul has participated in numerous Xtreme Hike events throughout the country. He is also a strong advocate and attends both March on the Hill and the California State Advocacy day each year. As one of the founders of BJ’s Restaurants, Inc., Paul spearheaded the “Cookies for Kids” initiative which has raised millions of dollars for CF.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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