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.
With the opportunity to broaden our scope, we
are opening up everything we do to people living with CF -- and we want to hear
Drucy Borowitz, M.D.
March 7, 2016
It's Not Easy to Confront the Emotional Toll of Living with CF
Attend our Volunteer Leadership Conference in Your Own Home: Join the Live Stream
There is a change coming to the Cystic Fibrosis Foundation and in our community, and I'm excited to be a part of it. You'd think it would be a no-brainer to recognize the powerful perspective of people with cystic fibrosis and their families -- the ones who know CF in an intimate and deeply personal way. Yet hearing that voice hasn't been a focus of the general medical community. The Foundation has included people with CF and parents in quality improvement projects for over a decade, but we are ready to expand in a new direction.
The vision of Community Partnerships, the Foundation's newest department, is to bring the perspective of people with CF and their families into all Foundation activities, and to support and partner with people touched by CF every day. As Community Partnerships' new vice president, I am excited to introduce myself to you, share my thoughts on where we might be headed and let you know that hearing from you is the most important part of my job.
I'm a grandmother now, but I became a CF center director when I had small children. This was not a career goal or something I sought, but a chance occurrence that changed my life. I originally trained and became a board-certified pediatric gastroenterologist, but I knew early on that it wasn't a path I wanted to pursue. Shortly after my husband's career led us to Buffalo, N.Y., all of the pediatric pulmonologists left, and I was asked to take care of the patients with CF. I met the members of the wonderful CF multidisciplinary team and was hooked.
In particular, the nurse coordinator, Mary Kontos, was an extraordinary person. She taught me the medical side of CF and also the human side. This was years before dornase alfa (Pulmozyme®), the first medication of the new era of CF treatment, and I grimace when I think of how few tools we had in those days. I can remember the first chest CT scan I ordered. That young child is now married, and the picture of her dancing with her father at her wedding is one of my favorites.
I have seen a wide range of ways that CF affects people, both medically and personally. However, my perspective is broad but not deep. I don't live with CF every day, and that's true of the majority of care team members and CF Foundation staff.
It's easy to understand why the Foundation's efforts have been primarily about drug discovery and development, although the creation and support of the care center network, the development of the Patient Registry and fundraising events like Great Strides are also signature features of what we do. I admire the decision to shift the Foundation's early focus from raising money "to buy mist tents for the poor sickly children with CF" to a broader view of supporting science to cure the disease. As a result of that commitment, more than half of all people in the U.S. living with CF are over 18, an astonishing and wonderful reality.
The CF Foundation now has an unprecedented opportunity to broaden its scope. We can continue to fund the best in basic and clinical research while also bringing your voice to the table in order to add to the insights that we've already heard from you about how to treat and live with CF.
Our shared challenges are many, but there are a few that stand out to me. First, we must figure out how to connect existing lines of communication with the CF community to all of the Foundation's activities. Second, we must create new connections with people in the CF community who aren't yet "plugged in." Third, and most importantly, we need to ensure that these conversations are real and unfiltered. The Foundation doesn't have an agenda here -- we're counting on the power of the community to chart the way.
We're already off to a good start. Hundreds of you have joined our group of Adult and Family Advisors (AFA), giving us your input on everything from the design of a pulmonary exacerbations survey to what you want to see on the new CFF.org. I'm excited to say that a planning committee is being assembled to build on an idea from the CF community for a virtual conference by and for people with CF. We'll be having our pilot conference this fall, so look for more information in a few months. In addition, we will be piloting peer-to-peer mentorship for adults with CF later this year. As a clinician, I also want to orient Community Partnerships toward working with care centers to free up the teams' time, and shift their focus from the crazy bureaucracy that is modern medicine in the U.S. back to what matters most: you.
If you haven't already, I encourage you to join the community conversations that happen through our social media accounts on Facebook, Instagram and Twitter. Let us know if you want to get involved in the AFA or the virtual conference.
My team and I want to connect with you. Danielle, Kelsey, Aimee, Allie and I want to hear about your interests and your pain points. To create real partnerships, we all need to be as open and honest with each other as we can. Please email us at email@example.com.
Drucy Borowitz, M.D.
Vice President of Community Partnerships, Cystic Fibrosis Foundation
Drucy is the vice president of community partnerships at the CF Foundation. For more than 25 years, Drucy was the CF center director at the Women and Children’s Hospital of Buffalo, and she is a clinical professor of pediatrics at the Jacobs School of Medicine of the University at Buffalo. She has worked on a wide range of committees and projects for the Foundation over the past three decades, and she will continue to have some involvement with the Therapeutics Development Center in Buffalo, where she is co-principal investigator. Drucy and her husband Phil Glick have two adult children and one grandson.
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, there are plenty of ways to get involved.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails