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.
My partner, Jan, was a CF fighter for 50 years. She lived an amazing life and celebrated her lung transplant to the fullest. She passed away a few months ago and I'm honored to keep her fight against CF going strong.
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Jan was a CFer.
Jan was a double-lung transplant recipient.
Jan lived 50 full years of life.
Jan was my partner and my best friend.
It is hard to articulate the impact someone has had on your life and the life of others, especially if that person was Jan. Jan Thompson's life -- and how she lived it -- is a true testimony to the fight against CF, the success and amazing opportunities
the gift of organ donation provided, and the spirit of someone who will never quit.
Jan passed in April of this year from complications of cystic fibrosis and lung rejection. There are no words
to articulate grief, what it feels like, looks like on you, how it impacts you and ultimately how you see through it every day. There is nothing easy about it and your life is never the same.
But through grief comes promises, conversations, and the long-standing impact and legacy of an amazing individual. It is through those promises I have found hope.
I got to love Jan after transplant and see all the amazing ways that she celebrated her lungs. She jumped out of planes (twice) and off the Stratosphere in Las Vegas, zip lined, parasailed, went paragliding, navigated a hot air balloon, and kayaked the
ocean. She loved the freedom of the air and the solace of the water. Through all these amazing adventures we made wonderful memories.
With all that Jan accomplished, her most inspiring endeavors involved her participation in Cystic Fibrosis Foundation events. Fundraising for Team Got O2?! (Jan's name for her team) for such events as Cycle
for Life, Great Strides, and Xtreme Hike became a part of our lives. Training hikes, creating T-shirts, selling candy bars (yes, Jan loved Fannie May), and fundraiser events became our passion. Nothing compared to watching Jan train for those events
and her commitment and dedication to do so.
In 2018 she signed up to do what she labeled the “trifecta.” She would hike the spring Xtreme Hike with the Gateway Chapter in Missouri, then hike the Grand Canyon Xtreme Hike with the Arizona Chapter, and conclude with the fall Xtreme Hike back in Missouri.
Jan was a 48-year-old CFer doing it all and determined to finish. She did finish, although the battle of getting enough electrolytes won in the Grand Canyon and Jan had to turn around just before reaching Phantom Ranch. She hated that, but she loved
that she attempted one of the most challenging Xtreme Hikes. What Jan didn't realize was that her commitment to hiking, her speech at the dinner the night before, and her passion would inspire the hearts of every hiker, hike guide, and the entire
We had the privilege of returning in 2019 to the Grand Canyon where I did the Xtreme Hike. But life looked a lot different. Not only did we switch roles, with me hiking and Jan volunteering, but Jan was six months into lung rejection -- one year, one
change, and one big difference. I still don't know how she did it: the plane ride, the altitude changes, and the inability to breathe. However, she did it because that's what Jan did. She sat at the finish line and greeted every single hiker with
a hug, watching the first hiker come in and waiting until sunset to greet the very last. She wanted those people to see CF, to see her fight, and to see her give the ultimate thanks to anyone who helped us get closer to a cure.
Life continued to change and -- ultimately -- we received a terminal diagnosis in January 2020. There would be no second lung transplant for Jan. As we navigated what that kind of news brings to a relationship,
a future and our current life together, we leaned on promises. I was never a great hiker or cyclist, but running was my passion. I promised to continue to run after she passed and to find solace in those runs, much like Jan found it in the air and
the water. She promised to be with me on those runs. I promised to continue the fight to find a cure for CF and to honor her legacy with Team Got O2?! I fulfilled that promise shortly after her passing by signing up for the Gateway Chapter's fall
Xtreme Hike. I promised to take trips, live to the fullest and do all the things we didn't get a chance to do.
She promised to be there on every one of those journeys, life decisions, and future challenges I would face. I believe she already has done so.
What Jan may or may not have realized is that with every hike, walk, and cycle event, she gave us all the ability to fight -- fight CF, fight loss, and fight grief. If you knew her, your life will never be the same and there will never be another Jan.
But, in a world of challenges, we can all “Be the Jan.” It's a simple formula really, Laugh Often + Love Deeply + Never Quit.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Danielle has embodied the roles of partner, caregiver, and advocate for cystic fibrosis over the course of the last six years. Through her late partner Jan and their Team Got O2?! Danielle has participated and fundraised for Great Strides, Xtreme Hike,
Cycle for Life, and been on the planning committee for the Foundation’s Gateway Chapter’s FestivAle. Outside of her passion for CF awareness, Danielle is currently the Associate Director of Athletics and Deputy Title IX Coordinator at Fontbonne University
in St. Louis. She currently resides in St. Louis with Jan’s beloved dogs, Izzie and Eeyore. Danielle’s favorite pastimes are running half marathons and various 10K/5K road races and spending time with her nephew Ryker. Follow Danielle and her Team
Got O2?! adventures on Facebook or Twitter.
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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.
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