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

CF Foundation Supports South Carolina’s Efforts to Ban Co-Pay Accumulators

Dear Chair Gagnon and Members of the Banking and Insurance Subcommittee, On behalf of the more than 500 people living with cystic fibrosis in South Carolina, we write to express our support for H.
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

Cystic Fibrosis Foundation statement on FDA approval of TRIKAFTA, the first triple combination therapy for the most common CF mutation

This medicine represents the single greatest therapeutic advancement in the history of CF, offering a treatment for the underlying cause of the disease that could eventually benefit more than 90 ...
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

CF Can’t Stop Me From Running

Growing up with cystic fibrosis made me stubborn and determined to accomplish everything that I was told I could not do. At my elementary school track and field day, I would make sure to always choose ...
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

Stephanie Krenrich

Stephanie leads the Foundation's federal policy agenda. Working with Congress, federal agencies and executive branch officials, she develops and executes strategies to promote innovative research, ...