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.
Our hearts stopped when we first heard that our grandson, Jase, had cystic fibrosis. We didn't even know what it was. However, we have learned a lot along the way and have gotten used to rolling with the ups and downs of this disease.
September 10, 2021
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When our second grandson, Jase, was born we were so excited. This beautiful little boy would be so loved. Then we were told he had cystic fibrosis. Our hearts stopped.
We soon became very frustrated as parents because we could not help our son help his son. We were unable to talk with the doctors about the diagnosis and treatments because we were not immediate family.
Over the years, we have experienced the highs and lows with Jase just as others with loved ones with CF do. Jase is 7, and he has had six surgeries. Each time is a gut-wrenching experience. Always in the back of our minds, we think, “Is this the answer
to this problem? Will this give him some relief?” Happily, the surgeries have all been very productive, and the care teams have and are fantastic. And Jase, our little superhero, takes it in stride.
Oh, don't believe there are not emotional moments and scares. We just help him work through them with love and patience.
Being grandparents and caregivers to a CF child is difficult. Taking the time to do treatments and not slighting the other grandchildren is
hard to manage. Knowing when a cold is just a cold or is CF-related can be hard -- the same with knowing whether a tummy ache is just the need to use the bathroom or is a blockage. We have realized that giving advice to his parents based on our own
child-rearing experience is not always the best thing for Jase. We do what we can to support our family as they struggle to make decisions on what is right for their child.
Hospital stays are the hardest -- whether it is a two-week tune-up, a bowel blockage that takes days of G-tube laxatives, or a necessary surgery.
Ever since his neonatal intensive care unit stay, he has never been alone at the hospital. Between his parents, both sets of grandparents, and his aunts and uncles that are close by, there is always someone with him.
Jase has given us the strength to fight for all those with CF; we joke in our house that as a Schlosser, it's “go big or go home.” Jase is one of four people in the world with his specific mutations (one nonsense and one rare). But he is always smiling
and acting like a normal kid -- broken bones and all. He has learned to care for himself and knows the right questions to ask.
We are always amazed at how much Jase takes responsibility for in his own care, even at such a young age. He is teaching us all how to live life to the fullest and how to have faith and love. He has a strength that is unmatched and unparalleled. He gave
us a memory box one Christmas so we can capture all the things we do together. It brought me to tears. Jase has the heart of a lion, and he certainly has his pride. (Jase's Pride is the name of our Great Strides team).
He reminds us daily to not take anything for granted. We cherish all the times we have with him and all our family.
When we first learned of his diagnosis, Marian reached out to the San Diego Cystic Fibrosis Foundation Chapter. The chapter gave us all hope, explaining that there were many drugs in the pipeline and already established treatments. They also showed us the many ways we could help raise the much-needed funds to help find a cure.
Well, we jumped in with both feet and did our first fundraiser before Jase was a year old. We started in our first year by participating in Great Strides. During our subsequent
Great Strides walks, we discovered that finding others who had children with CF was huge. We have developed relationships with those other families and are now like one great big family.
During our second year of volunteering, we asked the chapter what we could do to help. Since that time, we have tried to attend or help with all the chapter's fundraisers. We became involved with Grampions,
a group of grandparents and grandpersons who are passionate about helping those with CF live their best lives. Grampions is a group of like-minded individuals who are often under-utilized looking for a cure to this life-shortening disease. It is more
than raising money -- it's providing awareness about CF. Group members can relate to each other and share their experiences, both good and bad.
As grandparents, we have the time and means to help our grandson and others with CF. With one of us retired and the other almost retired, the Foundation has given us not only a purpose -- to be more than ourselves -- but a desire to do more for those
who truly need help and a cure for CF.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Grandparent of a child with CF
Jamie is the Papi to his grandson Jase, who was born with cystic fibrosis. Jamie has worked for the Navy for the last 42 years, both on active duty where he retired as a chief petty officer and as a civilian employee. If you don't find Jamie at work or
on the golf course (he does love his golf), you will find him actively working to support many of the Cystic Fibrosis Foundation fundraising events, either participating in them or volunteering to support, however and whatever is needed. Jamie is
active in CF awareness. He unabashedly will take any opportunity to talk about CF, the path to a cure, and the need to raise money and awareness. He is also active in advocacy and does not miss an opportunity to interact and advocate for those with
CF. He shares the honor of being the GRAMPIONS co-chair with his lovely wife, Marian. You can connect with him on Facebook, Instagram,
Marian is the Nana to her grandson Jase, who was born with cystic fibrosis. She is retired so that she can be Jase’s caregiver. She works with the San Diego Cystic Fibrosis Foundation Chapter. She is the team leader for the Great Strides team -- Jase’s
Pride. She has been involved in many Foundation activities, such as Cycle for Life, Golf Tournament, Surf for CF, Gala, women’s group, Great Strides leadership team, Advocacy, GRAMPIONS co-chair for California, and many more. She lives in San Diego
with her husband, Jamie, and three dogs, Teddy, Lucky, and Chewy. You can connect with her on Facebook, Instagram, and email.
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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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