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.
Each year, Great Strides Ambassadors inspire walk participants across the country and are the face of the adult cystic fibrosis community. Meet the 2017 Ambassadors, Lea Faraone and Willem Wery, and learn why they stride for CF.
March 29, 2017
Why I’ve Become Grateful for My CF
5 Tips to Get the Most Out of the Volunteer Leadership Conference Live Stream
Meet Lea Faraone and Willem Wery, our amazing 2017 Great Strides Ambassadors! The Foundation sat down with each ambassador and got to know a bit more about them, why they stride for CF, and what they love about life. Here are their answers:
Willem: Just three? How about a few? Kind, thoughtful, smart, driven, and humorous.
Lea: I had to take a poll from a good 20 friends for this one, but the top words I got the most were motivated, driven, compassionate, and hilarious.
Willem: I stride for CF because I have CF. After years of not being involved with the CF community and fundraising, I stride with my team, the Wery Walkers, to raise money to support the research and community of CF patients who are living with this disease.
Lea: When I started striding for CF in 2008, it was in hope of getting one step closer to a cure so that I could one day live a life free of CF. However, as I started to share my story, so many people with CF reached out to me and told me their stories, and I can now honestly say they are the reason I stride. These people are not just some of my best friends, they are the most kindhearted, inspiring, and resilient people I have ever known. They deserve to live a life free of constant breathing treatments, hospital stays, and spending almost every second they have thinking about breathing.
Willem: The power to cure CF. But if you mean “super power,” I'd probably want the ability to fly. Traveling without being in an airplane (and its germs) or getting stuck in traffic jams would be great.
Lea: I wish I could snap my fingers and be anywhere in a matter of seconds! Could you imagine how much easier it would be to travel with CF with all of our treatments if we teleported?
Willem: For most of my life I tried to keep my diagnosis a secret and did not engage with fundraising, or the CF community. At 57, I want to help raise money to support others with CF. I want to share my story and inspire hope for parents of children with CF, and be an example of an adult with CF who has lived a full life -- gone to college, had a career, gotten married, raised a family, and now, retired [and I have] a granddaughter.
Lea: After an extremely rough time with my health, I decided to get more involved with the Foundation and Great Strides to do everything I possibly could to help find a cure. I am honored and thankful to be given this platform to spread awareness about CF and share my story with the CF community.
Willem: Jimmy Fallon or Dwayne “the Rock” Johnson. Jimmy is super talented, smart, funny, and nice. “The Rock” is good-looking, big and strong, with a good sense of humor.
Lea: Jennifer Lawrence, because she is strong, down-to-earth, and absolutely hilarious, which I like to believe sums me up in a nutshell.
Willem: My best friend, my love, my wife -- Kathy. She's my partner, mother of my kids, my social director, and lately, she's taken on more aspects of my health support as my caretaker and advocate.
Lea: I absolutely could not live without my family. They are my best friends and my biggest supporters in life. I couldn't imagine my life without them.
Willem: I fundraise by leveraging my network of friends, family, and business colleagues. Personally, I send a lot of emails, and I'm planning to use the Great Strides tools this year.
Lea: I've learned the best way to fundraise is by being honest and telling your story, especially through social media. Sharing your story, or the story of a loved one with CF, on social media channels is one of the fastest ways to reach a large audience, give a human face to this disease, and inspire people to donate.
Willem: Great Strides is a way for me to fundraise and support the search for a cure for the most important health issue that I, and many others, face. It's fun to build a walking team and do the walk together.
Lea: I love Great Strides because it offers so much hope for not only my future, but for the future of all of us with CF, our families, friends, and supporters in this community. Great Strides is a key contributor in helping to find a cure.
December 2018 -- We were deeply saddened to learn of Lea’s passing. Lea was involved with the CF Foundation in many capacities. She served as a 2017 national Great Strides ambassador, co-chaired her local chapter's Great Strides walk, and shared her heart to the CF community through the CF Community Blog. She will be missed by many.
Senior Director of National Great Strides, Cystic Fibrosis Foundation
As Senior Director, National Great Strides at the CF Foundation, Robin leads the national Great Strides walk program. Prior to joining the national team in Bethesda, MD, she worked for nearly nine years at the Delaware Valley Chapter in various roles, but most recently as Associate Executive Director. Originally from Huntingdon, Pennsylvania, she has a B.A. in Corporate Communications from Susquehanna University and is the mother of two children, Maxwell and Sydney. In her spare time, Robin enjoys spending time with her family, summers on the lake, vacationing at the beach, and watching home improvement shows on HGTV.
Share this Post
This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
Follow Us On
With more than 70 chapters and offices across the country, it’s easy to find and join a local Cystic Fibrosis Foundation chapter near you.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails