Mark your calendar for our Volunteer Leadership Conference live stream on April 7 and 8! Hear from members of the cystic fibrosis community from across the country about advances in CF research, fundraising strategies, and how you can become a teamMATE.

Register today: [ On.cff.org Link ]

Cystic Fibrosis Foundation

on.cff.org
Today, the House is scheduled to vote on the American Health Care Act, legislation that fails to adequately protect people living with cystic fibrosis. One new provision of this bill would effectively eliminate protections against annual and lifetime caps--even for the millions of Americans with employer-sponsored insurance--in addition to undermining the guarantee of comprehensive coverage...
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Tell Congress to Oppose the American Health Care Act

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In our next portrait from the Beyond the Lab series, Margarida D. Amaral, Ph.D., professor and director of Biosystems & Integrative Science Institute at the University of Lisbon, shares what inspires her and members of her research team.

“I am a lab person. I started in a lab and now I have a big group, but my work has always been lab related. However, my goal is also that the work we do in...
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Congress will soon vote on the American Health Care Act. People living with cystic fibrosis need high-quality, specialized care and adequate insurance and the proposed legislation fails to protect our community.

Your calls and voice matter! Getting in touch with your member of Congress is easy -- you can text "PROTECTCARE" to 52886 or share your opposition here: [ Act.cff.org Link ]
Register for Great Strides = ✔

Now it's time to start fundraising! Follow these four simple tips to meet or exceed your goal.

Great Strides Fundraising Resources - Cystic Fibrosis Foundation

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Since every case of cystic fibrosis is different, treatment plans are unique to the individual with CF. Share with us in the comments: When a part of your daily treatment routine isn’t working, what have you done or said to your CF care team that led a helpful change in how you do your CF treatments? Your responses may be shared with clinicians at care centers to help shape the experience of...
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Do you or does someone you love have cystic fibrosis? Take action to protect their health care, and tell Congress to oppose the American Health Care Act. People living with CF need access to high-quality, specialized care and affordable, adequate health insurance and the proposed legislation fails to adequately protect our community.

Tell Congress to Oppose the American Health Care Act

on.cff.org
Packing up and going to college can be a difficult transition for anyone, but it can become more complicated when you have cystic fibrosis and you're switching care centers, too. Today on the CF Community Blog, read how Hogan Reed, who started at University of Vermont in 2015, adjusted to her new life and adult CF care team.

Saying Goodbye to Pediatric CF Care and Hello to Adult CF Care

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Today, we’re thrilled to share the final Impact Grant awardee, the United States Adult CF Association, a non-profit run by adults living with cystic fibrosis. The group will use their Impact Grant to cover printing, mailing, distribution, and website upkeep for their quarterly national newsletter, CF Roundtable. Written by adults with CF, for adults with CF, the newsletter has been published...
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Today the Cystic Fibrosis Foundation, along with 86 other organizations, issued a letter calling on Congress to take a hard look at the likely consequences of the American Heath Care Act on patients. With this letter, we hope to continue to emphasize the critical importance of Medicaid for people living with CF, and for other people with complex health needs. Medicaid provides a critical...
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Cystic Fibrosis Foundation Joins 86 Organizations to Call on Congress to Protect Medicaid

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New to tube feeding? Watch as Jordan Robison, an adult living with cystic fibrosis, shares step-by-step how she cleans her feeding tube.
"Nothing good ever resulted when someone compared their pain to the pain of those around them. Don’t get me wrong, it is good to tell stories in an effort to relate to those going through a challenging situation, but a one-up type of discussion misses the entire point: empathy."

Today on the CF Community Blog, Ray Poole, whose wife has cystic fibrosis, discusses the challenge to be empathetic...
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Your Pain Is Not Like Mine

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On the centennial Founder’s Day for Delta Phi Epsilon Sorority, we want to thank all of the women of DPhiE for their support in helping us advance our mission -- to find a cure for all people living with cystic fibrosis.
Did you know that CF Foundation Compass provides personalized service for people living with cystic fibrosis and their families to answer questions and navigate challenges they face accessing care? Last year alone, Compass had more than 5,000 requests for assistance with insurance, financial challenges, legal information, and more!

Visit our website today to learn how you can directly speak...
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CF Foundation Compass

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Clinical trials are critical to developing potential new treatments for cystic fibrosis and may have many benefits for people who choose to participate. In addition to helping move research forward for the entire CF community, you or your loved one could gain access to potential CF therapies before they are more widely available.

Learn more about the other potential benefits of participating...
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Why Participate in a Clinical Trial?

on.cff.org
Show your support for Great Strides by updating your cover photo to raise awareness for people living with cystic fibrosis!
Brittany Mahoney, a parent to an 18-month-old living with cystic fibrosis, shares how she and her husband prepared after learning of her daughter's CF diagnosis while she was pregnant.

Diagnosed Before Birth: Getting My Daughter's CF Diagnosis

on.cff.org
We’re excited to share another recipient of our Impact Grant, the sINgSPIRE program! With the Impact Grant, sINgSPIRE, through Breathe Bravely, will provide 15 students 10 weeks of free, private voice lessons with a qualified voice instructor, who will work on strengthening participants’ respiratory systems, improving self-awareness, and building confidence.

Learn more: [ On.cff.org Link ]
Last week, more than 100 advocates from 43 states joined us in Washington, D.C. for our 11th annual March on the Hill! See the highlights from the 250 meetings our volunteers had on Capitol Hill.
In a study published in the Annals of Internal Medicine, an analysis of cystic fibrosis patient registry data from the U.S. and Canada found that Canadians were living on average about 10 years longer than their American counterparts. Today on the CF Community Blog, two of the study authors discuss the findings and offer some possible explanations for the results.

Understanding the Differences in Survival Between Canadians and Americans With CF

on.cff.org