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.
Published on February 13, 2013
This feature focuses on a special person or
team who played an integral role in the 2012 Great Strides walks. We hope you'll
find this story to be inspiring as we continue to make Great Strides in our
efforts to find a cure for CF!
Walk: Houston, TXChapter: Gulf Coast
Chapter Team: DeLorenzo Dashers led by Sharon and
Jason DeLorenzo and their children Sophia, 11, who has CF; Jack, 9, who has CF;
Grant, 4; and Paige, 2.Impact: Raised more than $230,000
Why I Walk
DeLorenzo family has been participating in Great Strides for more than ten years
and raised $230,000 in 2012. Sharon, mother of Sophia, 11, and Jack, 9, is
thankful for treatments that allow her children to participate in sports and
maintain strong friendships with peers.
I walk in Great Strides so my
children and nephew can live healthy lives.
Sophia, my oldest, was five
weeks old when she was diagnosed. She hadn't gained any weight since she was
born so we knew something wasn't right. The doctor ran tests and the sweat test
came back positive. The diagnosis was actually a blessing - it meant we could
Jack was diagnosed via ultrasound when I was six months
pregnant with him. We also have two other children who do not have CF.
Around the time that Sophia was diagnosed, my nephew, now 15, was showing
symptoms. The family finally put two and two together and had him tested. He was
diagnosed with CF a week after my daughter.
When Sophia was six months old, we launched
DeLorenzo's Dashers with a letter-writing campaign. I've been writing letters
Writing those annual letters is one way we deal with CF. The
letter gives us an opportunity to describe a part of our life that other people
don't always see. For me, it's very therapeutic.
The letters also let
people know what our kids are able to accomplish in spite of their diagnosis. We
show people that kids with this disease really can live normal lives. We also
try to educate people about CF and often include information about new
What We're Thankful For
Jack don't see CF as a challenge. They are able to keep up with their friends
and do the things kids do, like participate in sports and see friends. I'm so
thankful that they are able to live relatively normal lives. You cannot see that
they are different - and that's due to the new medications and treatments that
keep their lungs clear.
Tips for Other Great Strides
People don't understand this disease and they want to know
why they should donate. Parents need to educate people about your child and
specifically how drugs can improve your child's life. Telling that story and
making it personal makes a difference.
My dream is for a medication, like Kalydeco, to be available for my children
and all children with CF.
Follow Us On
With more than 70 chapters and offices across the country, it’s easy to find and join a local Cystic Fibrosis Foundation chapter near you.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
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