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.
Meet Marissa Benchea, one of the 2016 Great Strides Ambassadors. The Great Strides Ambassadors are here to inspire all those who participate in Great Strides walks across the country and to represent the face of the adult cystic fibrosis community.
Published on April 27, 2016
Walk: Nashville, Tenn.Team: Marissa's Kisses, since 2009
I am fortunate to say that my childhood was blessed and idyllic, despite the fact that I had to battle cystic fibrosis from the time I was a baby. I really credit my parents for helping me stay as healthy as one can be in the face of this disease and for helping me be happy growing up.
My mother passed away the same year that I started my own Great Strides team and, unfortunately, I lost my father a few years later. Losing your parents at a young age is life-changing for anyone, but for me it also meant the loss of my emotional support system and the people who helped me maintain as normal of a life as possible.
I stride every year to remember my parents and how far they have helped me come in life. I will continue to walk to honor their memory and everything they did to give me a full life.
Great Strides is the largest, strongest fundraiser that the CF Foundation has. There is no other event that brings together so many incredible people from our community. It's become this big rally that celebrates life, our momentum and milestones toward finding a cure. Great Strides is one of the few events where I can actually see more than one person with CF -- because of the infection control policy in place -- so it holds a special place in my heart. Being asked to represent the adult CF community as a Great Strides Ambassador at one of my favorite Foundation events is a huge honor.
I mainly use social media channels to fundraise, with Facebook as the key platform and a little bit of Twitter, LinkedIn and email sprinkled into the mix. I have even started an Instagram account, @kissoffcf, to document more of my life with CF and my yearly campaign. Great Strides is my favorite CF Foundation event and I want to do my part in helping to make it a success.
I am hoping to start a passion fundraising event this year or next. A passion fundraising event involves fundraising around a hobby of yours. Next year I am turning 40 and would like to combine a Marissa's Kisses fundraising event with a birthday celebration! I want to do something funky and off the wall, like maybe hosting an old movie night with everyone dressed in caftans, lounging around on chaises with cats roaming everywhere. I love celebrating birthdays and 40 is a major milestone, especially for someone with CF. I would not be here without the Foundation, and I am super excited to plan this once-in-a-lifetime event!
The CF Foundation has given me a sense of purpose. Since I am no longer able to work, volunteering and advocating with the Foundation makes me feel like I am a part of something bigger. I initially became more involved by first volunteering on a committee at my local chapter. Over time, this led to various speaking engagements at Foundation events and joining the Tennessee Chapter Board, which I eventually chaired in 2011. Serving in this capacity was what helped me to become more engaged at the national level.
Since I stopped working in 2010, I have relished the opportunity to do more to help others. I became involved with advocacy as the Tennessee state advocacy co-chair, served on the CF Foundation Adult Task Force and Adult Advisory Council. Doing this kind of volunteer work really enriches my life.
The CF Foundation also represents family to me. This community makes me feel like I am not alone and doing this all by myself. When I am in the hospital and not able to do my part, I know that there are thousands of others out there still fighting for me and everyone else with CF. There are all of these foot soldiers out there who never stop working. I feel as if I have a million people behind me and that's what inspires me to keep on going.
Visit our Great Strides website to learn more about how you can get involved.
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