Cystic Fibrosis Foundation

Giving Voice to Those Without Modulators

For those who don’t benefit from modulators, the fight against CF can feel isolating and uncertain. Five members of our community share how they’ve transformed their personal struggles into purpose — ...
Cystic Fibrosis Foundation

Why I’m Grateful After My Late Diagnosis

At 50 years old, my health began to deteriorate in ways no one could explain. For nearly two decades, I searched for answers. It wasn’t until I was 69 that I finally learned the truth: I have cystic ...
Cystic Fibrosis Foundation

Coalition Submits Statement on Modernizing Care Coordination to Prevent and Treat Chronic Disease

Chair Buchanan, Ranking Member Doggett, and Members of the Committee: On behalf of the Partnership to Protect Coverage (PPC), a coalition of nonpartisan, nonprofit patient advocacy organizations, ...
Cystic Fibrosis Foundation

Coalition Issues Statement on Congressional Inaction to Address Expiring eAPTCs

Today, 36 nonpartisan, nonprofit patient advocacy organizations issued the following statement urging Congress to secure an immediate solution to the expiration of the enhanced advance premium tax ...
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation Invests $5 Million in Sionna Therapeutics to Develop New CFTR Modulator Therapy

New modulators in development by the CF-specific company could provide unique treatment options for the underlying cause of cystic fibrosis for many people with the disease BETHESDA, Md. — The Cystic ...
Cystic Fibrosis Foundation

FDA Expands Use of Orkambi® to Children With CF Ages 2 to 5

The U.S. Food and Drug Administration approved the use of lumacaftor/ivacaftor (Orkambi®) today for children with cystic fibrosis ages 2 to 5 who have two copies of the F508del mutation. The U.S. Food ...
Cystic Fibrosis Foundation

People With CF Are Living Longer. What Does That Mean for Our Care?

The Cystic Fibrosis Foundation recently announced that there are almost 40,000 people living with CF in the United States. Not only are there more of us with CF, but we are now living longer. Based on ...
Cystic Fibrosis Foundation

What It’s Like to Experience Food Insecurity as a Person With CF

Food insecurity is a long-standing problem in America. According to the U.S. Department of Agriculture (USDA), food-insecure households are those with “limited or uncertain access to adequate food.” ...
Cystic Fibrosis Foundation

CF Foundation Invests Up to $2 Million in Nosis Bio for Potential Gene Therapy Delivery Technology

Nosis Bio, an inaugural winner of the Foundation’s Golden Ticket Competition, receives funding to further explore design of novel ligands, which are specialized molecules that could help more precise ...
Cystic Fibrosis Foundation

Unexpect the Expected: What I Learned After My Lung Transplant

During the 18 months I spent waiting for a double-lung transplant, I researched everything I could about the process. I asked post-transplant patients about the pain of the surgery, waking up, the ...
Cystic Fibrosis Foundation

Ryan Wiggins

Ryan is a St. Louis media personality and author of the book, "The Life of Human." His wife is an English teacher and his kids are all riding bikes with no training wheels now. For the most part, I ...