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 January 3, 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: Tulsa, Centennial Park, walk held May 12, 2012Chapter: Sooner Chapter - Tulsa Office
Team: Team Kaleb led by Kristi and David Bowers and their son Kaleb, 12, who has CF, and Hannah, 10.Impact: Raised more than $23,000 so far in 2012
Why We Walk
Team Kaleb, which has been participating in Great Strides since 2001, raised more than $23,000 and expanded to become a national team in 2012.
Our son Kaleb was diagnosed with cystic fibrosis at 3 months old. He was having a lot of health problems, so doctors just started running tests. At the time, we had never heard of the disease - we didn't know anything about it. He was my first born, so it was devastating for our family.
He was diagnosed in March. We learned a lot about CF almost immediately and decided to participate in our first walk months later, in May. For us, it was - and is - all about learning as much as we can about the disease and doing what we can to help. Participating in Great Strides makes our family feel like we're contributing something instead of just waiting for a cure.
Each year, our team just keeps getting bigger and bigger. At our first walk, it was just a few of us - we even had homemade T-shirts. Now Kaleb is 12, and he invites his whole class to come.
We've had so much success raising funds locally that this year we decided to expand our fundraising efforts and form a national team. My sister lives in California and my cousins live in North Carolina, so each of them had a group walk and raised money. It was really fun to expand our walk beyond our own community here in Oklahoma.
Our Biggest Challenge
Kaleb spends 45 minutes to an hour each morning and evening doing breathing treatments and taking medication. The hardest thing is finding and keeping a balance with normalcy in our lives. We have to recognize that CF does change things; you have to miss school for weeks at a time or take off from work.
Our doctor has been really great guiding us through this process. He reminds us not to let CF take control of our lives. Instead of sitting around and allowing CF to control our lives, we still make plans, we still go on vacation as a family. If Kaleb does get sick, we make an adjustment and forge ahead.
How We Help Others
Kaleb Bowers, diagnosed with CF at 3 months old, is now 12 and enjoys playing basketball.
I make it a point to talk about the disease as much as I can. I speak at different CF fundraisers and other local events to try to spread awareness. It's really important to me that people know what CF is.
I have a blog called “A Little Hope From Oklahoma.” It's really about our journey with CF and through the blog we're able to help and connect with others. Knowing that I am helping others affected by CF helps me stay strong for Kaleb and for my family. We're 12 years down the road with our journey, so I feel like I can give good advice about how to deal with some of the challenges that come with CF.
What We're Thankful For
The CF community - especially online - is really supportive. That community and Kaleb's doctor really help us to do everything we can to stay positive. Our church, our school and my relatives are all very supportive, too. I know we couldn't do what we do without them. We've also had a very positive experience with our local CF chapter here in Oklahoma. They always support our fundraisers and give us the resources we need when we need them.
Tips for Other Great Strides Teams
Parents and teams who are just starting can get discouraged if they compare themselves to those who have been fundraising for awhile. It's important to just focus on doing what you can do that particular year and remember that some years are better than others.
It's also important to be creative and don't be afraid of doing a lot of smaller events throughout the year. The small things really do add up.
I encourage anyone affected by CF to share their stories and get involved with the Foundation; that's what's going to get people to care about this disease. You're not just asking for money - you're putting a face on this disease.
We just really want a cure for CF in Kaleb's lifetime. We want to see him do all of the things he wants to do: graduate from high school, get married, have a family.
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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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