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 COVID-19, a year indoors -- and online -- has brought up a familiar feeling that screen time has the potential to bring us hope and laughter. On the other hand, the internet can also convince us that the sky is falling.
May 12, 2021
Pursuing a Career in Radio and TV Despite My CF
CF Didn’t Stop Me From My Dream of Becoming a Mom
“Just years ago, the internet was an escape from the real world. Now, the real world is an escape from the internet.”
If this quote from Noah Smith does not perfectly encapsulate the past year that has been, I don't know what phrasing would better accomplish that task. The past 13 to 14 months have been unexpected, unprecedented, and largely unforgiving. The fact that
you are reading this blog post makes it overwhelming likely that you are an individual with CF, know an individual with CF, or work with individuals with CF, and thus the COVID-19 timeline has potentially been harder and more anxiety-inducing on you than most.
Tim with his sons Lewis (left) and Arlo (right).
When an unknown, unstudied respiratory virus emerged on the scene across the globe, it was the kind of scenario CF nightmares are made of. The virus quickly spread and sent us all indoors -- away from our families and friends. Many of us worked online
remotely, and FaceTime interactions and Zoom happy hours became the norm. I recall a neighbor predicting it would “be a few weeks” before life would return to normal, while others prognosticated that it may go on forever, with life never returning
One of the first things that pinged in my brain when all of this started was how I had heard (and lived) this story before; this was my CF diagnosis scenario from 1984 happening in real time in 2020. There were serious health risks and decisions at hand,
and -- depending on who you asked -- the sky was falling and hope was gone. Or, certain lifestyle adjustments had to be made that would ensure vibrant and meaningful life would continue for yourself, those you love, and your fellow community members.
As a CF patient myself, the COVID life adjustment equated to an immediate transfer of all social contact, work hours, and entertainment activity to online platforms, and it happened with the speed of a bullet train. Relationships, professional productivity,
and most mental health breaks became interfaced through the glow of screens. Big screens, small screens, lean screens, green screens … and how lucky are we to live in an age where this was possible, right? You could watch Netflix start to finish if
you had the time, you could see the faces of your loved ones in earnest or covered in goofy Snapchat filters, or you could engage in group text threads and interact on social media to check on folks and let others know you are there, in return.
But screens don't just carry the faces of those we love, the shows we enjoy, and social media memes and filters that make us laugh. Screens carry political arguments, bullying, amplified anxiety, and bad news by the truckload. As CF patients, we have
long known the vast, dual power of screens.
Ask any CF patient about CF support channels and groups available on the internet and they can give you a handful or more groups or accounts off the top of their head that either cultivate and encourage vibrant, meaningful life or, conversely, preach
that the sky is falling and hope is gone.
When I was born with CF in 1984, screens were a simpler tool for which I had an unspoken contract with as I grew up. Screens kept me on the couch to complete my CF treatments via completing a level (or five) on Super Mario for original Nintendo, or Sonic
the Hedgehog on Sega Genesis. Screens held me in one place for my parents' manual chest therapies as I watched Minnesota Twins games, hoping to witness a Kirby Puckett highlight
play, live! A friend of mine from business school once told me over dinner that he absolutely hated video games until he heard me explain how they provided the distraction necessary to commit to CF treatments,
day after day. Video games had led to healthy outcomes, for me.
Tim with his wife Ashlee and their sons, Lewis and Arlo.
Later in life, I had met no one with CF, nor had a conversation with another CF patient until the advent of social media. This coincided with my first post-college job, when I joined the Minnesota/Dakotas Chapter of the CF Foundation as a fundraiser in
the summer of 2007. At that point, I was 23 years old and had never interacted with another CF patient. Screens allowed us to converse about our CF experience safely without risk of cross-infection,
and let us share our stories with one another in a convenient way. Blog posts such as this one -- hosted by the Foundation or elsewhere -- allow CF patients from different countries and continents to educate one another and give insight to their CF
Yes, screens have tremendous upsides; but a bottomless downside is only ever a click or two away.
Negative outcomes for those living with CF still occur, despite the tremendous medical advancements and increases in life expectancy in recent years. There is the 50-year-old CF patient who has healthy lungs but severe depression related to CF factors;
the 35-year-old who is waiting for the call for a double-lung transplant; and the 20 year old CF-er who is heading off to college with a port placement that they are uneasy about tending to in their dorm room. And, let's not forget the teenage CF patient who is hiding their enzymes in the couch cushions as an act of rebellion after a year of in-and-out hospitalizations.
Screens allow us all to connect and have our voices heard, but whether it's CF-related, COVID-related, politics-related, etc., the staining effect of exposing ourselves to too much bad news often carries significantly more weight than the good news we
seek to help us win the day.
What does a screen mean?
Now, more than ever before, a screen is a tool that each of us uses, according to our own desires and disciplines, to seek out hope, laughter, love, and the good in the world -- or to indulge in the cynicism, frustration, and anger the world makes so
readily available to us.
What I want from a screen is fun, laughter, and love. If it's not doing that, I'll close tabs and rise above.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Tim was diagnosed with cystic fibrosis as an infant and credits his parents and CF care team for providing him with years of phenomenal CF care. He completed his MBA in social entrepreneurship, works full time in the community services sector of state government, and recently released a children's book inspired by his son, Lewis. 14% of the book sales will be donated to the CF Foundation to support the organization that has helped Tim beat his 14-year life expectancy by multiple decades. Tim lives in the Twin Cities of Minnesota, with his wife of nine years, Ashlee, their two sons, Lewis (3) and Arlo (8 months), along with their maltipoo dogs, Bou and Sully. Tim worked for the Minnesota/Dakotas Chapter of the CF Foundation from 2007-2010 as a full-time fundraiser and remains involved in the annual Breath of Life Gala event with the support and participation of family, friends, and colleagues.
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