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.
For those who haven't experienced it, the Cystic Fibrosis Foundation's annual Volunteer Leadership Conference is a magical time when everyone can get together and share moments of hardship and triumph in the fight against cystic fibrosis.
March 20, 2020
The Wait For My Son’s Trikafta
My Unconventional Airway Clearance Routine
There's a magical time of year when my hope is restored, friendships become more like family, and I can look around the room and my heart is filled with love. If you've attended, I bet you already know what I'm talking about -- the Cystic Fibrosis Foundation's Volunteer Leadership Conference (VLC).
This annual conference just celebrated its 17th anniversary in a very different format than in years past. Nothing is more important than protecting the health and wellbeing of people living with CF, volunteers, and the Foundation staff. Because of COVID-19, the decision to transition to an online format was made just two weeks before the conference date. I'm sure this was a very difficult, heart-wrenching decision for Dr. Mike Boyle and the Foundation to make but, undoubtedly, it was the correct one.
As a result, instead of being together in Washington, D.C., on March 13, more than 600 volunteers gathered virtually to support one another from all over the United States. From Drs. Mike Boyle, JP Clancy, Bill Skach, and Ann Field, we learned important medical updates about COVID-19 and the Foundation's vision to find a cure for all those living with CF. Executive Vice President and Chief Operating Officer Marc Ginsky encouraged volunteers to continue to be “relentless” in our determination to fight for a cure. The volunteer leadership team, led by Board of Trustees member Mike Beatty, was recognized and applauded for its hard work in the last year. Melanie Abdelnour and Tannaz Motevalli, adults with CF, shared raw, impactful experiences and gave the group insight into how a support squad can help adults (and children!) living with CF. More so than ever, the online chat was overflowing with comments from volunteers tuning in.
From all the presenters, we heard stories of hardship and triumph, and my fire to fight this disease until it's “really, totally done” for every person was fueled.
I am still humbled to have co-chaired this year's VLC with Ray Poole, another CF spouse. It was a very significant year in the world of CF. With the FDA approval of Trikafta™ and the announcement of Path to a Cure, the past 12 months have been more than I could have wished for. During VLC, the volunteers heard about all the latest advancements and plans, and while I listened sitting next to both new and longtime friends, my heart was full of gratitude.
Chad, my 38-year-old, double delta husband, should not have lived to a double-digit birthday. He should not have been able to swim on the swim team or make it to college and play lacrosse there. We should not have been able to get married, have two sons, and live the happy and full life we are living.
But the Foundation, the doctors, and the visionaries were determined to not let CF win.
Together, they joined forces and made such a difference, making my life with Chad possible. I cannot thank the work of the Foundation and the volunteers who came before me enough. It's mind-blowing to me that CF has come so far that spouses of CF fighters are not only attending VLC but co-chairing. We've come so far.
But also, while broadcasting from the Foundation in Bethesda, my heart was not satisfied. CF is not done. We have come so, so far, but we are nowhere close to done. I'm tired for Chad -- tired of the long hours he spends on breathing treatments and tired of the worries we share about our future and the possibility of what it could mean for our sons, Liam and Tate. I'm scared that we will lose more children, moms, dads, brothers, and sisters before CF is truly done. Really. Totally. Done for Every. Single. Person. I know I'm not alone in my feelings -- and also know I have a relentless group fighting at my side.
VLC is magical. More than 600 people joined together virtually to fight CF. We have the very best community out there. We are united, and we are stronger together.
Ray and I already are looking forward to hosting in person next year in San Antonio, Texas! Get your cowboy/girl boots ready!!
Spouse of a person with CF
Julie is an advocate for all things CF. She and her husband, Chad, are inspired and motivated by volunteering with the Cystic Fibrosis Foundation in numerous ways. Formally a co-chair of a 20+ year dinner dance, Julie is now a mentor with Community Voice,
a Tomorrow's Leader, the leader of a Great Strides team, is serving as the 2020 Volunteer Leadership Conference Co-chair, and has been featured on the Breaking Through podcast. Julie was born in Michigan and currently living in Alexandria, Va., where
she is a mom to two boys and a full-time teacher. She enjoys running, going on adventures with her family, and scouting out local food gems. Follow Julie and her Great Strides team online on Instagram @inspire_spero and @julieriedy, Twitter @julie_riedy, or on Facebook.
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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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