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Cystic Fibrosis Foundation @CF_Foundation

Recognized globally, the CF Foundation has led the way in the fight against cystic fibrosis, fueling extraordinary medical and scientific progress.

Joined July 2009
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Cystic Fibrosis Foundation@CF_Foundation
18 Nov 2022
Stay connected to the Cystic Fibrosis Foundation! Follow along in our relentless pursuit of a cure for CF on social media and email.
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Thank you, @SenatorShaheen, @SenatorBaldwin, and @RepUnderwood for championing the Health Care Affordability Act, a bill making premium tax credits permanent for those insured through the marketplace and ensuring that health care is accessible and affordable for all. #CFAdvocacy
Sen. Jeanne Shaheen
@SenatorShaheen
9 Jan 2025
Proud to introduce my Health Care Affordability Act as my first bill of the 119th Congress. Families are already struggling to make ends meet and allowing the Affordable Care Act premium tax credits to expire would make health care costs skyrocket. Let’s get this done.
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The @US_FDA has approved the expansion of Trikafta to additional people with #cysticfibrosis ages 2 and older who have certain rare mutations. on.cff.org/4iMlQn8

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We know that between 10–15% of people with CF are not eligible for or cannot tolerate modulators. We are committed to ensuring everyone will have a treatment for the underlying cause of their cystic fibrosis, and ultimately, a cure.
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Read the news story and learn which rare mutations may now be eligible for Trikafta.
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Alyftrek, a new, once-a-day CFTR modulator for people with cystic fibrosis has been approved by the @US_FDA.
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Because the Foundation is aware of published reports of mental and cognitive side effects of people with CF on Trikafta, it is funding a study in development that will examine mental health and cognitive function of people with CF who start Alyftrek.
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Read the news story about the approval of Alyftrek, including the rare mutations of the CFTR gene that have been approved for Alyftrek. on.cff.org/4grYd1C
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We have agreed to invest up to $15 million in ReCode Therapeutics to fund the development of a gene editing therapy that is designed to use ReCode’s delivery system to transport gene editing cargo to the lung cells in people with #cysticfibrosis.
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First, the lab research will target the correction of a nonsense mutation. Other rare mutations that are not eligible for CFTR modulators will be explored later.
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We are committed to pursuing a transformative treatment for all people with #cysticfibrosis, especially those who can’t take CFTR modulators. on.cff.org/3YXxkLw
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Thank you, @SenKatieBritt, for meeting with Miss Alabama, Abbie Stockard, to learn about her best friend who lives with cystic fibrosis and discuss the needs of the CF community. We hope we can count on your leadership and vocal support to pass the PASTEUR Act this year!
Senator Katie Boyd Britt
@SenKatieBritt
13 Nov 2024
Wonderful meeting Miss Alabama today to discuss her powerful advocacy for those living with cystic fibrosis. Her dedication to raising awareness and supporting research gives hope to so many families across our state.
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In recognition of the fifth anniversary of Trikafta’s approval, we’re sharing five stories from the CF Community Blog that reflect the community’s emotions and experiences taking the treatment.
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“My sense of self became blurry. I felt more invisible than ever before. So much of my identity before revolved around CF. It was the thing that bound me, the glue that held each step I took, the through line in my story.” on.cff.org/4f9Ifs2

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“Two days after my sinus surgery — February 13, 2020 — I took my first dose of Trikafta. In only a couple of days, I woke up and didn’t find myself coughing before rolling out of bed. No cough, no catching breath, no recovery. I took a deep breath.” on.cff.org/3Yuq9LY
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