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Cystic Fibrosis Foundation
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1,365 followers
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If you have cystic fibrosis, there is a possibility that at some point you may need a lung transplant. In plenary two from NACFC, Dr. Joe Pilewski discusses the benefits of starting the transplant conversation early and the steps that should be taken during the transplant process. Check out the CF Community Blog to read some of the highlights.
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We’re proud to introduce CF Peer Connect: a peer mentoring program for people living with cystic fibrosis age 16 and older. Whether you’d like to connect with a peer mentor about going to college, dating with CF, or starting a family, a peer mentor can help by sharing their experiences, listening, and being a resource to you. Sign up today to be matched with another adult with CF.
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Couldn’t tune in virtually for NACFC? The live streams from plenary one, two, and three are now available. Watch to learn about the latest in CF research, the transplant process, and how you can get involved with the CF community.
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Open enrollment begins today for the health insurance marketplace! Choosing a new health insurance plan can be confusing and take a lot of time, but you don’t have to do it alone. Compass is here to help! Contact our case managers today.
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Open enrollment is just around the corner, and if you or your child has cystic fibrosis, you may have questions about how to choose a plan that meets your needs.

Now's the time to ask! Our Compass team is here to help. Submit your questions about life with CF today to be answered by one of our dedicated case managers in our next Ask a Case Manager blog post.
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Today, the Cystic Fibrosis Foundation, along with 15 other patient organizations, issued a joint statement in response to the Graham-Cassidy Bill, which the Senate is currently considering. This bill is unacceptable for people living with cystic fibrosis and other chronic conditions because it repeals full pre-existing condition protections, drastically cuts Medicaid, rolls back essential health benefit protections, and opens the door to annual and lifetime caps. We urge Congress to continue with a bipartisan approach and ensure health care is adequate, affordable, and accessible for all.
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After James Holoubek and his wife learned that their daughter, Emma, had cystic fibrosis, they came up with a plan to maintain a daily schedule for her CF treatments and care. Today on the CF Community Blog, James shares the five steps they follow to uphold this routine.
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Great news for the cystic fibrosis community! Today, the Food and Drug Administration approved ivacaftor (Kalydeco) for people ages 2 and older who have one of five splice mutations.

In the U.S., there are more than 600 people ages 2 or older with at least one of these five mutations. The FDA based this approval on the drug’s established safety record and clinical evidence, as well as laboratory data.
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"Ask everyone you know. And their friends. And their family. You will hear more than one 'no,' but you will also get 'yeses' that you never would have expected."

Not sure how to start fundraising? Or maybe you feel like your fundraising ideas are stale? Jaci Strube, a parent to a child living with cystic fibrosis, shares six tips for keeping your fundraising efforts fresh.
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How can you turn your favorite pastime into a fundraising event? Whether you enjoy scrap booking, running 5Ks, or hosting dinner parties for your friends, Passion Fundraising can turn your hobby into a unique event.
on.cff.org/2usm23j
on.cff.org/2usm23j
passioncff.org
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