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.
Last updated on July 24, 2014
Each month through the end of the year,
we'll feature a special person or team who played an integral role in the 2013
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!
Ava, 3, is the inspiration behind the Ava's Angels Great
Strides team. She was diagnosed with CF as an infant, but doesn't let the
disease hinder her free spirit.
NC walk held May 18, 2013Chapter: Carolinas
Chapter - Charlotte Office Team: Ava's Angels, led by
April Waltz and her daughter Ava, 3, who has CF.Impact:
Raised $10,000 so far in 2013
Why I Walk
four weeks old when she was diagnosed with cystic fibrosis. Prior to her
diagnosis, I had never heard of CF. I did a google search for “cystic fibrosis”
and after reading the first sentence, my life changed forever. I fell to my
knees and just asked God to catch me and hold me.
Ava's Angels was formed
when Ava was just six months old.
How I Fundraise
This year I decided to try something different - I got the business community
involved. I emailed restaurants, spas, retailers, etc. requesting charitable
gift certificates and prizes that could be given to my team's top walkers. It
Ava's Angels raised $10,000 this year, more than three
times what we raised last year.
Angels, led by Ava, 3, and her mom, April Watlz, raised $10,000 to help support
the search for a cure. April reminds other Great Strides teams to use the
fundraiser as a way to bring people together. “This is about joining a community
and working together for a common goal,” she said.
Cystic fibrosis has taught me to look at the world
differently. I've learned to live every minute to the fullest. All of those
challenging moments have made me a stronger person. They've taught me to
appreciate all of the happy moments life has to offer. I would not be the strong
person I am today if it wasn't for my husband, friends and family. Ava's Angels
is a joint effort and the accomplishments we've made have been made as a
Tips for Other Great Strides Teams
to take time to make your campaign personal - share a story that makes someone
laugh or tugs at a heart string. When people make donations, write thank you
letters explaining why the fundraiser means so much.
If you are
fundraising via email, keep all emails informative but positive. Limit the
number of emails you send out in your campaign so they don't become repetitive.
The first email is the most important, so really make it count. Remind people
that this isn't just about money; it's about joining a community and working
together for a common goal.
Also remember that people's financial
situations can change. It's important to get people focused on the cause, not
just the money. Get people in your community to feel passionate about the search
for a cure. Every single dollar counts.
Ava has a free spirit and I want her to nurture that. I want to be able to
dare her to dream bigger. I want to see her live her dreams, regardless of how
many she has, how they may change, or how challenging they may seem.
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With more than 70 chapters and offices across the country, there are plenty of ways to get involved.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
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