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.
While we often see politicians on the campaign trail, there's another side to them that the public doesn't always see. By sharing my story, I've made real connections with my state representatives to help them better understand CF and positively impact my son's future.
Elaine Ruh, MBA, PHR, SHRM-CP
December 5, 2018
Living in Limbo
Facing My Fears About Transitioning to an Adult Care Team
The campaign ads are fast and furious in the month leading up to elections. Then suddenly, the elections are over, and the camera shows the individuals in suit coats behind podiums, turning red in the face as they state their stance on a proposed bill
or legislation. The final votes are counted, and it's either back to the drawing board or onto implementation. In a few short sentences, that's politics.
But, this is only one side of our representatives, legislators, senators, and other elected officials that we see. The other side is that they are human, just like you and me. They get up in the morning, brush their teeth, put on their socks and shoes,
and travel to their jobs. Our futures are in their hands and they vote based on the information presented to them, which is why it's important for us to continue telling our individual CF stories.
When I saw all the CF advocates who met with their representatives in Washington, D.C., during March on the Hill, I said to myself, "I want to be on that team. I want them to hear Maddox's story. I want them to have a picture of him in their hands when they are casting their
votes on medical issues, wages, science, and other areas."
A year ago, I never would have had that thought. It can be intimidating to have your name tied to something where you could be called to the Capitol, to be involved in “politics.” But, after seeing how impactful these meetings can be, I felt that this
was something I needed to do to continue to push for a cure: to make sure the funding for CF programs is intact and the proper regulations are in place to protect my son as he grows up.
Here is the “behind-the-scenes” story of my life. I am a full-time working mom to a 3-year-old son with CF, wife, volunteer on a local board of directors, friend, and family member. I don't have much time in the day. I am doing laundry at 9 p.m. I am
brushing my teeth while cleaning my bathroom. I am multitasking all the time. I don't have a ton of “extra” time in my calendar, as I'm sure most of us can relate to.
Even though I'm not in a position to add much more to my plate, advocacy has become an important adventure in our CF journey. Building relationships with my elected officials is a priority that I was determined to make work with my busy schedule. So,
I started my journey and emailed the CF Advocacy team. After a phone conversation on what advocacy would entail, I started emailing, Facebook messaging, and tweeting my local representatives.
That's right -- Facebook. They are human after all.
So far, I've had two representatives reach back out to me (mind you, I contacted them during the middle of their campaign trail). One of the representatives met with my husband and me during lunch, and one invited us to a family dinner at a restaurant
(he brought his spouse and newest addition to the family, and we brought Maddox). Both events were completely informal.
Don't get me wrong -- it started off awkwardly, as you truly are complete strangers. But, after a quick conversation about the weather and the Green Bay Packers (common ground for discussion in Wisconsin), the awkwardness quickly faded, and the discussion
turned as if we were old friends catching up. In both conversations, it was all about learning more about them: their hobbies, their careers, why they went into their roles, their true intentions while in office … and then, we discussed Maddox and
From there, it was truly a learning experience for them, as they might have heard of cystic fibrosis but really didn't understand what it meant. Of course, because CF has impacted our lives so much, we feel that we have become the subject matter experts
and need to share everything we know about it. We handed them a picture of Maddox along with a packet of information about his disease. We shook hands, grabbed a quick photo, and parted ways.
The meetings were only 30-45 minutes long, but they were so important. Now, when a new proposal comes across their desks, they can reference back to our conversation and reach out to us to discuss the potential impact that proposed legislation has on
Since meeting, we've friended each other on Facebook and they have started to follow our Great Strides team's page. Now, I feel that we have a real connection. There is a face to the name, a story behind the photos, and a reminder that we are all human.
Once they are back in session, I will send out emails just to check in to see if they have any questions, and I am hoping they will do the same.
Join the conversation on Facebook.
Elaine Ruh, MBA, PHR, SHRM-CP
Mother of a child with CF
Elaine is a mother to her son, Maddox, who was born with cystic fibrosis. After earning her Master of Business Administration (MBA) from Concordia University Wisconsin, she now works in the technology business as a Senior Human Resources Generalist and volunteers on the local Fox Valley Society for Human Resource Management Board of Directors. Elaine recently volunteered as an advocate for the Cystic Fibrosis Foundation and just wrapped up her second year leading a Great Strides team. Elaine lives in Appleton, Wisc., with her husband, Nick, son, Maddox, and their pups, Remy and Lexi. You can follow her on her blog.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails