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.
The Woods family, currently featured on the homepage of CFF.org, share their favorite part of Great Strides walk day, their proudest moments as parents of a child with CF, and more.
May 4, 2017
Why I Climbed Mount Kilimanjaro to Raise Funds for CF
Devoted to My Wife and Her Memory
At the Cystic Fibrosis Foundation, we pride ourselves in featuring real people with CF in all of our photos. It's part of our commitment to documenting #CFirl (or, cystic fibrosis in real life, if you're not familiar with the hashtag).
When you see someone on CFF.org doing their treatments, talking to their clinician, or just living their life, you'll know that they've graciously agreed to put their face on this disease.
Recently, I had the pleasure of meeting the Woods family and capturing their excitement around Great Strides walk day. They were such an amazing family and it got me thinking: wouldn't it be nice if everyone got to “meet” the Woodses?
How did you get involved with the CF Foundation?
Our son, Tobin, was diagnosed with cystic fibrosis when he was two weeks old. When we got the news, it took some time to sink in. We experienced a wide range of emotions including devastation, sadness, anger, frustration, and helplessness. We are not doctors, scientists, or anyone with the knowledge required to find the cure for CF, so we did what we COULD do -- we got in touch with our local CF Foundation chapter. Through the Foundation, we received education about the disease and the research already underway. We received guidance and were introduced to a great support network.
Why did you choose to get involved with Great Strides?
One of the biggest hurdles when you first receive the diagnosis is feeling powerless against a seemingly overwhelming enemy. The Foundation provided options for our family to use our combined experience and personal strengths to make a difference in our unique way. The Great Strides walk was a natural fit for our friends, family, and coworkers, and gave us a positive outlet for our energy.
What is your family's favorite part of walk day?
Our two favorite parts of walk day are spending quality time with our support system and enjoying the walk location. First and foremost, Great Strides walk day is about community. Each year, the event lifts us up as a family and is a much-needed reminder that we do not walk this path alone. It truly means a lot to us that the people in our support system make the choice to spend that day with us. We have team walkers who travel from other states including Georgia, Virginia, and New York. The Great Strides walk has become a yearly reunion of sorts and allows us to reconnect with our friends and family.
The second thing we love is the location. The Volusia Great Strides walk is unique because it takes place on the beach. We throw off our shoes, feel the sand between our toes, breathe in the salty air, and end the evening with a beach bonfire. The beach creates the perfect setting for making new memories and helps us slow down to focus on what's really important: our family, friends, and health.
What is one thing everyone should know about Tobin?
Tobin brings so much laughter and joy to this world! Some of his favorite activities include dancing wildly, singing the Star Wars theme at the top of his lungs (sometimes in public), and spreading his infectious giggle. Despite all of his doctors' appointments, blood tests, medications, and therapies, he usually maintains a sense of humor (as much as a three-year-old can). He is always reminding us to keep laughing and smiling, and to make time for fun no matter what life throws your way.
As his parents, what is your proudest moment?
We work with Tobin every day to teach him to be independent and to take care of himself. It's incredibly fulfilling to watch him accomplish a new task and shout joyfully, “I did it all by myself!” From picking out his own outfit and getting himself dressed, to strapping himself into his Vest and learning to swallow enzymes with water -- our proudest parenting moments are when Tobin reaches a new development milestone or steps up to take ownership of his health.
From Ainsley's perspective, what is the best thing about being Tobin's sister?
Ainsley is a caring soul and loves having somebody to watch over. She was born to be a big sister, and the two of them are fiercely protective of one another and play together wonderfully. Ainsley is very attentive about other kids with coughs on the playground and whether Tobin remembers to wash his hands when they come inside. She sometimes overshares about the nature and causes of CF with random children on the playground. Based upon some of their stunned reactions, the House and Senate do not stand a chance when she goes to Washington, D.C. for Teen Advocacy Day in a few years.
Is there anything else you'd like to share with the community?
We cannot fully express how thankful we are for the support of the CF community. We are thankful for our doctors, nurses, nutritionists, and counselors at our general pediatrician's office and at the Cystic Fibrosis Center at Arnold Palmer. We are thankful for the scientists and technicians around the world for their amazing, life-altering research. We are thankful for our friends, family, teachers, and coworkers and for their patience as we work to make sure that CF doesn't define Tobin's life or how he lives it.
We are thankful for the amazing crew at the Central Florida Chapter of the Foundation (and the Wisconsin Chapter, too) for putting us in a place to make a difference in this fight. We are thankful for the CF parents and adults with CF who we have met through the Foundation and on Facebook. No matter what scary thing we've had to endure -- whether hospital stay, infection, or figuring out insurance -- somebody has gone through it, too, and survived. This community celebrates every success together and, together, we endure every setback. Beyond the walks and rides and meetings, this community is unparalleled in its excellence and we are so grateful to be a part of it.
Former Digital Content Manager, Cystic Fibrosis Foundation
Ashling previously worked at the Foundation as a digital content manager. She helped keep the Foundation's website and blog up to date with news and information that's important to the CF community. Ashling first got involved with the Foundation through Delta Phi Epsilon sorority at York College of Pennsylvania, where she earned her B.A. in public relations. Originally from New Jersey, she now lives in Pennsylvania with her husband, son, and two dogs.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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