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.
One of the questions that we ask our representatives during the Foundation's signature advocacy event, March on the Hill, is to join the Congressional CF Caucus. Here is my story of what happened when I (accidently) asked a senator to join that caucus.
June 22, 2016
Why I Became a 2016 Great Strides Ambassador
U.S. Senate Cystic Fibrosis Caucus Adds Momentum to the Fight
In the first few months after Major's cystic fibrosis diagnosis, I knew I wanted to do everything that I could to help find a cure. But I didn't know what that would look like.
As a long-time writer, I started a blog to share my journey of early motherhood. This gave me an outlet and helped me form a community of moms to support one another. Fundraising was my next project, and much to my delight, I have continued to find great generosity in the depths of people's hearts. As I was exposed to more and more ways to get involved with the Cystic Fibrosis Foundation, I found myself the state advocacy chair for Iowa. It was there that I truly found my passion.
This past February, I was selected by my chapter to attend the CF Foundation's 10th annual March on the Hill. Advocates from all across the country brought their stories of loved ones battling CF to their congressional leaders. We were all educated on the current policy initiatives affecting people with CF today, and entered our meetings prepped and ready to go.
One of the tasks we were given was to ask our representatives to join the Congressional Cystic Fibrosis Caucus. There was no Senate CF caucus, so there was no need to ask senators to join. After a great first meeting with Senator Chuck Grassley's health policy director, Karen, where I shared my personal story of raising a 2-year-old with CF, I wrapped it up by asking if Sen. Grassley would please join our caucus.
Insert foot in mouth. My husband and one of my CF momma friends who were with me both looked at me like I had two heads. I'd like to chalk it up to jet lag -- but I was mortified! They quickly scrambled to remind me that there was no Senate CF Caucus for Sen. Grassley to join. But then Karen surprised us all. She asked, “Why don't we have one?” And with that, the new Senate CF Caucus started to take shape.
Upon our return to Iowa, I immediately got on the horn with Sen. Grassley's office and the CF Foundation to follow up on that fateful conversation with Karen. The Foundation's wonderful advocacy team quickly mobilized and worked hard to build upon the initial interest expressed by Sen. Grassley's staff. As luck would have it, Senator Edward Markey, who co-founded the Congressional CF Caucus back when he was a representative, was ready to support the caucus and sign on as a co-founder alongside Sen. Grassley.
The formation of the caucus was a wonderful whirlwind.
Now listen, I know that we don't get everything we ask for in life, but I always say that the worst thing someone can say is “no.” When I followed up with Sen. Grassley's office, I knew that might be his response, but I also knew that it could be the beginning of a conversation toward something else in the future and also the beginning of a new relationship between the CF community and a long-time member of Congress.
Since the caucus was formed, I have had the opportunity to meet Sen. Grassley. He was so gracious and happy to become a part of our fight. He even attended our Great Strides walk in Iowa on May 21 and spoke about his pledge to be an advocate and supporter for all those living with CF and their families.
So, take my word for it: even “dumb” questions can be the questions that get something done.
Mother of a child with CF
Jaclyn is a mother to her son, Major, who was born with cystic fibrosis. A graduate of the University of South Dakota, she now works in the financial services industry and also runs an online health coaching business. Jaclyn is a state advocate for the Foundation, a member of the CF Parent Advisory Council at Blank Children's Hospital, and an active fundraiser for Great Strides. She also serves as the Foundation's 2019 national advocacy co-chair. Jaclyn lives in Des Moines, Iowa, with Major, her husband, Drew, and their dogs, Eason and Lennon. Follow her blog, MAJOREASON.
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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.
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