CF_Foundation Profile Banner
Cystic Fibrosis Foundation Profile
Cystic Fibrosis Foundation

@CF_Foundation

Followers
30K
Following
6K
Media
3K
Statuses
21K

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

Headquarters in Bethesda, MD
Joined July 2009
Don't wanna be here? Send us removal request.
@CF_Foundation
Cystic Fibrosis Foundation
3 years
Stay connected to the Cystic Fibrosis Foundation! Follow along in our relentless pursuit of a cure for CF on social media and email.
14
23
50
@CF_Foundation
Cystic Fibrosis Foundation
6 months
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.
@SenatorShaheen
Sen. Jeanne Shaheen
6 months
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.
0
7
37
@CF_Foundation
Cystic Fibrosis Foundation
7 months
@US_FDA Read the news story and learn which rare mutations may now be eligible for Trikafta.
0
1
5
@CF_Foundation
Cystic Fibrosis Foundation
7 months
@US_FDA 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.
1
2
10
@CF_Foundation
Cystic Fibrosis Foundation
7 months
The @US_FDA has approved the expansion of Trikafta to additional people with #cysticfibrosis ages 2 and older who have certain rare mutations.
2
14
44
@CF_Foundation
Cystic Fibrosis Foundation
7 months
@US_FDA Read the news story about the approval of Alyftrek, including the rare mutations of the CFTR gene that have been approved for Alyftrek.
0
1
7
@CF_Foundation
Cystic Fibrosis Foundation
7 months
@US_FDA 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.
2
6
13
@CF_Foundation
Cystic Fibrosis Foundation
7 months
@US_FDA Clinical trial results for Alyftrek showed improvements in lung function comparable to those seen with Trikafta, and a reduction in sweat chloride levels that exceeded treatment with Trikafta.
1
2
6
@CF_Foundation
Cystic Fibrosis Foundation
7 months
@US_FDA Alyftrek offers another treatment option for people with cystic fibrosis, including those who cannot tolerate Trikafta. In addition, Alyftrek only needs to be taken once a day — potentially making the dosing regimen easier for people with CF.
1
2
5
@CF_Foundation
Cystic Fibrosis Foundation
7 months
@US_FDA The new triple-combination modulator is approved for people with CF ages 6 and older who have a mutation that is eligible for Trikafta, or one of 3 rare mutations that had not been approved previously for a modulator.
1
1
3
@CF_Foundation
Cystic Fibrosis Foundation
7 months
Alyftrek, a new, once-a-day CFTR modulator for people with cystic fibrosis has been approved by the @US_FDA.
Tweet media one
3
22
52
@CF_Foundation
Cystic Fibrosis Foundation
8 months
We are committed to pursuing a transformative treatment for all people with #cysticfibrosis, especially those who can’t take CFTR modulators.
0
2
8
@CF_Foundation
Cystic Fibrosis Foundation
8 months
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.
1
2
8
@CF_Foundation
Cystic Fibrosis Foundation
8 months
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.
2
6
41
@CF_Foundation
Cystic Fibrosis Foundation
8 months
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!.
@SenKatieBritt
Senator Katie Boyd Britt
8 months
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.
Tweet media one
Tweet media two
1
1
27
@CF_Foundation
Cystic Fibrosis Foundation
9 months
“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.”
0
0
12
@CF_Foundation
Cystic Fibrosis Foundation
9 months
“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.”
1
1
10
@CF_Foundation
Cystic Fibrosis Foundation
9 months
After starting Trikafta, Patrick Brown, an adult with cystic fibrosis, felt healthy enough to attend culinary school and become a chef. By learning to cook diverse cuisines, he improved the quality of his meals and was able to better maintain his weight.
1
0
5
@CF_Foundation
Cystic Fibrosis Foundation
9 months
“It wasn’t just us who noticed changes in Tegan’s personality. Tegan’s teacher told me about her aggressive behavior and emotional volatility, which the teacher found extreme. I felt like I couldn’t help her.”
1
0
4