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.
Through a new Speaker Series, the Foundation invites people with cystic fibrosis and their families to the national office to share their stories and help Foundation employees better connect with members of our community.
May 6, 2016
Living Above My CF Diagnosis in the ‘60s and Beyond
Clinical Researchers Prep for Record Year of Trials
We have a strong and talented team at the Foundation: some of us work directly with the community and others work behind the scenes, keeping the Foundation running. But it is important for each and every one of us to
better understand CF -- the
complexities of the disease itself and the people we are fighting for.
With this in mind, the CF Foundation national office launched a Speaker Series so that employees get the opportunity to listen and learn more about
life with cystic fibrosis directly from people with CF and their families. The ultimate goal of these events is to help staff members better understand, empathize with and feel more personally connected to the community we serve.
We have hosted two speakers this year. Our first guest was John Sackett, president of Shady Grove Medical Center in Rockville, Md. John spoke about beating the odds -- professionally and personally -- as a 59-year-old living with CF. His emotional speech left an impression on many of us. What stuck with me most were his motivational messages such as, “I'm doing everything I can to make my life meaningful. I want to encourage you all to keep going,” and “No one is going to care about your life as much as you. Take control.” His hour-long speech had the audience in laughter and tears.
Our second speaker was
Stacy Motenko, a 29-year-old with CF who helps others with the disease as a patient advocate for ModernHEALTH Pharmacy Services. Although Stacy has been involved with the Foundation for many years, this was her first time visiting the national office. She spoke about the progressive nature of the disease and how she handles the ups and downs of living with CF. She also touched on her need for adventure, her love of food, the loss of her best friend and life with her fiancé. Her emotional speech left me feeling inspired.
It's clear to me that the Speaker Series has already started to foster meaningful experiences, and it has given Foundation employees the opportunity to feel connected to and inspired by members of the CF community … one incredible story at a time.
Community Partnerships Specialist, Cystic Fibrosis Foundation
As the Community Partnerships Specialist for the Cystic Fibrosis Foundation, Kelsey partners with the CF community to bring the perspective of people with CF and their families into all Foundation activities. Kelsey is a Washington, D.C., area native who earned her B.A. from George Mason University. She enjoys spending time with her Staffordshire terrier and baking. Kelsey is currently pursuing a master's degree in social work.
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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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