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.
Great Strides is the Cystic Fibrosis
Foundation's largest national fundraiser. Every year, families, donors and
friends take steps to help support the search for a cure. Each month through
the end of the year, we'll feature a special person or team who played an
integral role in the 2014 Great Strides walks. We hope you'll find this story
to be inspiring as we continue to make Great Strides in our efforts to find a
cure for CF!
Published on December 29, 2014
Walk: York Beach, Maine
New England Chapter Team: Team Sweeney, a National Family
Team, led by Ketti and Jason Sweeney and their children, Liam, 5, who has CF,
Lily, 3, and Luke, 19 months Impact: Raised $21,340 so far in
We learned Liam had CF when I was
pregnant with him. I learned I was a carrier of the gene. The nurse said it was
probably nothing to worry about, but that we should get my husband tested just
in case. After the testing, an ultrasound showed that Liam had signs of CF.
We'd never heard of CF before. We did a lot of research on the disease and
through that research found the Foundation and the search for a cure. My
husband and I decided early on that we're not only going to be active
participants in our son's life, but active participants in the CF community as
well. We got involved in Great Strides a few months later. We want to be part
of the cure. It's become our focus.
For the last four years we've chaired
our chapter's Swing for CF golf tournament. I don't golf, but my husband does.
Learning how to successfully chair such a large event was a challenge, but
we've grown as fundraisers and now have better relationships with people in our
community. We have a good time doing it, and it raises a lot of money for the
CF cause. This year, we had our best tournament yet. We raised more than
We like to incorporate our personal interests in our
fundraising. In addition to the golf tournament, we host a wine raffle, Super
Bowl and March Madness-themed events, restaurant nights and pinup campaigns. We
supplement all of that with traditional email and letter-writing campaign. It's
so important to keep people in our lives updated on Liam and the progress being
made by the Foundation.
I love seeing so many people come together all for one cause. We have people
that drive and fly in from other states to come walk with us. It's a day of
unity and inspiration.
The Foundation is our lifeline. They are an extension of our family, and we
treat our local chapter like family. Everything the Foundation does is fighting
for a cure, and it means so much to us that so many people are advocating on
behalf of my son and all people with this disease.
We have so many dreams for Liam. We want him to be everything
he can and wants to be. We want him to live a life that's happy and free of CF.
Until that happens, we're going to do everything we can to fight for a
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