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.
After my son was diagnosed with cystic fibrosis, I knew I wanted to do more to fight for a cure. That's when I decided to start Charleston Mom Prom, a Passion Fundraising event that has raised thousands of dollars for CF, while allowing us moms to have a night on the town.
April 20, 2017
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When we received the news of our son, Brayden's, cystic fibrosis diagnosis at less than 2 weeks old, our lives were forever changed. Most CF parents can remember the exact day … where they were and exactly how they felt when they received that call. This was also our first child, so in the trenches of sleeplessness, around-the-clock feedings, diapers (so many diapers), and all the normal ups and downs of being a new parent, we were given this news.
Fortunately, we had the love and support of friends and family to get us through those first few months, and we were soon introduced to other CF families who gave us hope and shared the amazing strides that have been made in CF treatment in recent years.
The idea for Charleston Mom Prom came to me late one evening on a whim. At the time, Brayden was 3 years old, and I was embarking on my fourth year of fundraising for our Great Strides team, BZ's Buddies. Although we have some incredibly generous family and friends, I wanted to do something more. I wanted to be able to take a small amount of my time and resources and turn it into something bigger so that I could then contribute to the Cystic Fibrosis Foundation.
With the encouragement of a few other local CF mamas and our CF Foundation chapter, I decided to take the leap and started planning the inaugural 2014 Charleston Mom Prom. That first year, we had just under 50 women in attendance and raised just over $1,200. We had a blast, and I knew this was the start of something great.
This year, I hosted the fourth annual Charleston Mom Prom on March 4. With roughly 150 women in attendance, we raised over $11,000. As a mother of young children, I know how rare it is for other moms to get a night out and unwind. At Mom Prom, we get to dress up, go out with our girlfriends, and have a blast dancing, laughing, and making memories, all while supporting a cause that is so near and dear to my heart.
Every parent has their own way of fighting for their child with CF. I love to bring people together, organize, and plan, so Charleston Mom Prom has been a way for me to use my gifts and current stage of life to spread awareness and raise vital funds for Brayden and all those battling CF. This event has become a passion of mine and my way of giving time and energy to a cause that is so important to me. In the span of Brayden's six short years, I have met some amazing CF families, who have become an extension of ours. The time and energy I put into this event is now about so much more than just my son.
I have been blessed to have some incredible friends join alongside me to promote the cause and help it grow into something bigger and better each year. It's been humbling to see the support that I have received, not only from other local CF moms and my friends, but also from area businesses and individuals with no personal connection to CF.
My hope is that Charleston Mom Prom continues to grow, and that more and more people learn about the vital work the CF Foundation is doing to get us closer to a cure. I know that our family only has so much to give each year, but by finding a fundraiser that I'm passionate about and that brings people together in a fun and innovative way, I am able to do so much more to fight for a cure than I could on my own.
Mother of a child with CF
Sara is the mother of two young kids, Brayden, who has CF, and Savannah. She and her husband Jeff are currently expecting their third child. Originally from Indiana, she and her family now live in Charleston, SC. Sara has a master’s degree in Education, and enjoys the beach, exploring her beautiful city, dancing, spending time with family and friends, and coffee. She loves connecting with other moms and is passionate about health, wellness, and finding a cure for CF.
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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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