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.
Being a part of the CF Foundation has given me so much more than I could have ever imagined. That is why my wife, Nanette, and I have made a commitment to people with cystic fibrosis for years to come by making a legacy gift, an enduring statement of our values.
August 16, 2016
Why I Ride for CF
How One School Nurse Is Preparing for Three Students With CF at the Same School
When my daughter Brandi was born, she weighed only four pounds, five ounces and, to be honest, she struggled. I knew when she was born that we were in for something difficult. But, we were lucky. After 18 months, I could see she was going to be healthy -- we had gone through the toughest part.
Brandi is 33 now and has a family of her own but I have never forgotten that feeling -- the fear I experienced when she was born. As a way of expressing my gratitude for my daughter's health and acknowledging that I had only begun to understand the struggles of parents of children with chronic diseases like CF, I became involved in the CF Foundation.
Being a part of the Foundation has given me so much more than I could have ever imagined. I even met my now wife, Nanette, at a fundraiser. Little did we know that event attendance for a good cause would lead to marriage.
Nanette and I are inspired by the strength of people with CF and their families, who care and advocate for their children in the face of this terrible disease. Every day, we feel lucky to have the opportunity to meet parents and children with CF and to be a part of this tightknit community. We both feel a special compassion for and connection to each family we are lucky enough to meet -- it is truly humbling.
As president of the Board of Trustees of the Indiana Chapter, and as someone who has come to know and love the community of families touched by CF, I am committed to supporting the search for a cure for cystic fibrosis and better treatments now, and in the future. That is why Nanette and I have made a commitment to people with cystic fibrosis for years to come by naming the CF Foundation as a beneficiary of our trusts. This legacy gift is an enduring statement of our values.
We are hopeful there will be a cure before our legacy gift goes to the Foundation, but if not, we want to know that the effort to find a cure will continue. To us, a gift in our trusts is the continuation of what we do on a daily basis -- try to give back.
We hope you too consider making a legacy gift. It's easy to do, and the CF Foundation is very helpful in the process. The Foundation offers a great (and free) publication called “Easy Ways to Leave a Legacy” that can help guide you if you also want to leave an enduring legacy. You can obtain this by visiting www.cff.org/legacygiving or contacting Tricia Benson, Senior Director of Planned Giving at firstname.lastname@example.org or 240-482-2845.
Indianapolis Chapter President, Cystic Fibrosis Foundation
Thomas is Associate Vice President, Wealth Management at Morgan Stanley. He is also a long-time volunteer and leader in the cystic fibrosis community, and currently serves as the Indianapolis Chapter President of the Cystic Fibrosis Foundation. Tom and his wife, Nanette, met at a Cystic Fibrosis Foundation fundraising event in 2006. They work and live in the Indianapolis area.
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