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.
Even though nobody close to me had cystic fibrosis, I decided to try to make a difference in the lives of people with CF.
May 20, 2019
Ask a Case Manager: What Are Co-Pay Accumulators and Should I Be Worried?
Watching My Parents Grow Older
No one in my family has cystic fibrosis. No one in my inner circle of friends has CF. A lot of people have asked, “Why spend so much time on something that you have no direct connection to?” My response to them is that you don't need to go through something
directly to care about it and to make a difference. What sparked my interest in getting involved was the people I met along the way -- their passion, their dedication,
and their stories.
Growing up, I was always very involved in my community, but my journey to becoming a CF advocate started when I met Preston Campbell, CEO of the Cystic Fibrosis Foundation. Dr. Campbell has spent more than 25 years caring for people with CF and is passionate
about finding a cure for this disease. Our discussion turned to the Cystic Fibrosis Foundation and his efforts there. I became intrigued with their operation and started to think about how I could help.
Dr. Campbell introduced me to the executive director of the CF Foundation's Metro DC Chapter and many others. What I found were dedicated individuals, CF Foundation employees and volunteers alike, working hard to make a critical difference in people's
lives. They selflessly gave their time, attention, and resources to this organization.
As I was getting to know many in the CF Foundation, I learned that a former colleague of mine at Charles Schwab, Jeff Albrecht, had CF. I did not have the pleasure of working directly with Jeff but I heard from many colleagues who did. They
told me about how Jeff did not let CF define him; therefore many of his clients and friends didn't know he had it. They admired his optimism through adversity, his diligence, and strength, inspiring so many who knew him. He unfortunately had to leave
Schwab because he needed a lung transplant. Although he eventually passed away, Jeff left quite a legacy at the company. Even though I was never
able to meet him, I got to know many people who knew him well. We wanted to do something to honor Jeff's memory.
I immediately started to reach out to my network. I started close to home. In short order, we organized a dedication ceremony to Jeff. To honor him, I partnered with the Schwab Community Services Team and the local USA News Group to host a memorial event;
family, friends, colleagues, and clients of Jeff were in attendance. After people spoke and shared stories celebrating Jeff and his life, our team unveiled a plaque dedicating the branch conference room to his memory.
Not long after becoming a volunteer, I realized that through my desire to make a difference in a community, I had become part of a truly amazing one -- the CF community. I was surrounded by selfless people who sincerely wanted to see the lives of people
with CF get better. In meeting Dr. Campbell and others, I had learned so much about CF in a relatively short period. I knew one major area I could assist with was sharing this knowledge with others. I strengthened my resolve to educate people about
CF, help them understand the devastating effects of this disease, and identify what they could do to help as we work to find a cure.
Before I knew it, I was a guest at board meetings and over time, with my continued involvement, I was honored to be asked to join the the Metro DC Chapter board. I am grateful for the opportunity to sit on of the board of this extremely impactful organization
and, most importantly, I want to thank every one of its members for inspiring me each and every day with their passion, dedication, and stories.
Join the conversation on Facebook.
Metro DC Chapter Board Member
Trevor is a vice president-financial consultant at Charles Schwab in Bethesda, MD. With no direct connection to cystic fibrosis, he joined the Metro DC Chapter board to be involved with his community and give back. His contribution to the Cystic Fibrosis Foundation extends both locally and nationally though his helping to raise funds, garner interest, and develop a corporate relationship between the Foundation and Charles Schwab. He lives in North Potomac, MD with his wife and two kids, Leila, 6, and Kabir, 3. You can find Trevor on Facebook at or LinkedIn.
Share this Post
This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails