@KnowCF

A place to connect with those who are impacted by cystic fibrosis.

 United States
Joined January 2010
  • Tweets16K
  • Following2.3K
  • Followers4.7K
310Media
Antibiotic resistance is a public-health crisis we can’t ignore. New solutions are needed now. We’re calling on Congress to create policies that encourage innovation and help make new antibiotics available to patients. #SquashSuperBugs #CFadvocacy on.cff.org/38WNKuB
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Today the @JournalofCF published the first data on #COVID19 in children with cystic fibrosis. The study reports on 105 children with CF from 13 countries. cff.org/About-Us/Media-Cente…
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Today, we awarded up to $3.3M to Polyphor to develop an inhaled version of murepavadin, an antibiotic that targets multi-drug resistant Pseudomonas infections in people with #cysticfibrosis. Funding will support a Phase 1b/2a clinical trial in 4Q 2021. on.cff.org/2J4ZxwI
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When you only have [2] lines to fill in all of your medical conditions: “I’ll just write the big ones.”
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We’ve updated our community FAQs for #COVID19 to include advice for individuals with #cysticfibrosis attending school, going to work, and making your upcoming care center visits. cff.org/Life-With-CF/Daily-L…
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Yesterday, @CDCgov released guidance for people who are at higher risk for #COVID19 complications. Learn more about what you can do to prepare and minimize your exposure. on.cff.org/3cDXREL
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The Path to a Cure will accelerate treatments for the underlying cause of #cysticfibrosis for everyone with the disease. Follow the path to learn what that could look like for you or your loved one with CF.
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Me watching video after video of people with cystic fibrosis on my Twitter, IG and Facebook timelines take their first doses of #Trikafta
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'Remembering Elle', which features Becky Whitfield speaking about the tragic loss of her daughter to cystic fibrosis complications, has been nominated for a @CharityFilm_ Award. Please show your support by giving it a vote here: charityfilmawards.com/videos…
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Know CF retweeted
The New York Times
@nytimes4 Nov 2019
A pair of new studies report “impressive” benefits from an FDA-approved drug therapy for cystic fibrosis, a deadly disease that affects tens of thousands of people worldwide. The therapy is approved for use with about 90% of patients with cystic fibrosis. nyti.ms/2r74wEf

Studies Yield ‘Impressive’ Results in Fight Against Cystic Fibrosis (Published 2019)

The findings hold promise for a vast majority of those with cystic fibrosis, according to the director of the National Institutes of Health. “This should be a cause for major celebration,” he wrote.

nytimes.com
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The research that led to the triple-drug #cysticfibrosis therapy was published in 1989 in Science. An accompanying editorial at the time noted that this #BasicResearch was undertaken to advance knowledge, not for a predetermined application. science.sciencemag.org/conte…
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“CF was once a disease without hope. CF is not only the most amazing story in medicine, but because of your work, hope now abounds. We need to finish and finishing means curing #cysticfibrosis for everyone. We won’t leave anyone behind.” - Preston W. Campbell, III, MD #NACFC
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Patient story: Erika Judd shares her son’s experience battling cystic fibrosis and participating in a clinical trial. @CF_Foundation @KnowCF zcu.io/3mbG #clinicaltrials #volunteer #cysticfibrosis
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OUT NOW! We are thrilled to share Claire’s story with the world. Thanks to Nick Reed & @YouTube for your amazing vision & support. On the one year anniversary of her passing, we are so thankful for the impression she made on the world & miss her every day. bit.ly/YoutubeClaire
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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
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In 2018, more than 16,000 volunteers from the #cysticfibrosis community gave their time, energy, and 💜 to move us closer to a cure for CF. Today, we thank you for everything that you do! #NVW

Thank You Volunteer

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"I don't want to spend so much time down in that dark hole, but how can it be okay that the #cysticfibrosis is trying to take over my life? How can I stop worrying that the next infection will be 'it' -- that one illness I don't recover from?" on.cff.org/2GXNQWn
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We expanded funding to Talee Bio Inc. to $4.5M to develop ways to deliver a normal CFTR gene to the lungs of people w/CF. The company is developing 2 gene delivery candidates, with a goal of starting early stage clinical trials as soon as 2020. #CFresearch on.cff.org/2S9WgyY
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Excited to announce that "The CF Warrior Project: 65 Stories of Triumph Against Cystic Fibrosis" will be available in May 2019 which coincides with #cysticfibrosisawareness month. The book celebrates people who persevere and live life to the fullest every day. #cfwarriorproject
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Disaster Ahead: Cystic Fibrosis Related Diabetes (CFRD) – The complication that’s impacting your lungs more than you realize gunnaresiason.com/disaster-a…
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