CFF New Jersey Chapter

We’re closely monitoring the #COVID19 outbreak and will provide updated information relevant to the #cysticfibrosis community as the situation evolves. Learn more about steps you can take to prepare and protect you or your loved one with CF. on.cff.org/2Is4FaI

Last week, more than 200 advocates made the #cysticfibrosis community’s voice heard at March on the Hill and advocates across the country sent more than 13,000 messages to lawmakers during our Online Day of Action. Check out the highlights! #CFadvocacy⚡️teapawt.net/i/events/1235235941704…

#Cysticfibrosis community members from around the country are joining us in D.C. for our 14th annual March on the Hill! Follow along with #CFadvocacy tomorrow as they ask Congress to help sustain a robust antibiotics pipeline and access to adequate, affordable coverage.

"Because of my positive outcome, I’ve become an advocate for bringing [phage] therapy to more patients in dire need, facing antibiotic-resistant infections.” -@ellabalasa1, an adult living with #cysticfibrosis

Nearly 80 teen advocates from the #cysticfibrosis community took over Capitol Hill last week to speak with their elected officials about the importance of comprehensive health care for people with CF. Check out the highlights! #CFadvocacy ⚡️teapawt.net/i/moments/114576037289…

Thank you to all the teen advocates who joined us on Capitol Hill to make the voice of the #cysticfibrosis community heard. You are making a difference. #CFadvocacy

Teens head to Capitol Hill tomorrow for Teen Advocacy Day! Follow #CFadvocacy to see how they are fighting to help ensure people with #cysticfibrosis have comprehensive health coverage and robust @NIH and @US_FDA funding that supports drug discovery and approval.

.@US_FDA has approved tezacaftor/ivacaftor (Symdeko) for children between the ages of 6 – 11 with two copies of the F508del mutation or a single copy of one of 26 specified mutations. #CFresearch on.cff.org/2WVKEOH

Annie McMahon, a 22-year-old living with #cysticfibrosis, talked on the phone with @taylorswift13 following a viral video of a dance party in her hospital room. on.cff.org/2WKLUUF

Thank you to everyone who joined us in celebrating 65 Roses Day by joining the 65 Roses Club! Your support and generosity are making a difference for people living with #cysticfibrosis. 🌹

CF Awareness Month may be over, but we’re getting exciting for another celebration in the #cysticfibrosis community: #65Roses Day (6/5)! With just a few days until the big day, check out a sneak peek of what’s in store. 🌹

Has your child been recently diagnosed with #cysticfibrosis? Hear from other parents who have been in your shoes about how they handled the first year of infant care. on.cff.org/2wzDaWN

Vertex announced today that it will seek @US_FDA approval for its CFTR modulator VX-445 combined with tezacaftor/ivacaftor in the third quarter. If approved, the drug could eventually benefit more than 90% of people with #cysticfibrosis. #CFresearch on.cff.org/30Wrtan

Do you need help finding resources for living expenses or arranging transportation to your #cysticfibrosis care center? You are not alone: Check out all the different ways Compass can help.

Calling all artists with #cysticfibrosis! 👨‍🎨 👩‍🎨 Are you looking for a way to express yourself artistically and give back to the CF community? Enter our BreatheCon design contest and submit your artwork to be printed on this year’s BreatheCon swag. ➡️ on.cff.org/BreatheConSwag

“What a great pleasure and honor it has been for me to work alongside you to improve the lives of people with CF.” A special message from President and CEO Preston W. Campbell, MD.

Right now, Congress has proposed several bills that could increase protections for people living with pre-existing conditions, like #cysticfibrosis. Act now by asking your elected officials to support these bills and #DefendPreEx. #CFadvocacy act.cff.org/xD07NZ3

.@US_FDA has approved ivacaftor (Kalydeco) for babies as young as 6 months who have 1 of 38 CF mutations. The growing data on early treatment continues to support our belief that starting on modulators at a young age could help slow the progression of CF. on.cff.org/2vvYjAu

Nontuberculous mycobacteria (NTM) can cause difficult-to-treat infections. Today, we’re pleased to share we have awarded up to $5.1M to @TBAlliance to develop drugs to test potential treatments for infections caused by two types of NTM. #CFresearch on.cff.org/2Vl40jm

Growing up with a sibling with #cysticfibrosis means visiting them in the hospital, playing games together during treatment time, and so much more. Happy #NationalSiblingsDay to everyone who 💜 a sibling with CF!