News

Melanie Lawrence, an adult with cystic fibrosis, was selected to testify before a Senate Health, Education, Labor and Pensions subcommittee regarding the impact of antimicrobial resistance on patients who face heightened risk of infections, like those with CF.

More than 60 teens from across the country — almost half of whom live with cystic fibrosis — advocated for support of the PASTEUR Act.

The U.S. Food and Drug Administration approved Kalydeco^® (ivacaftor) for infants as young as 1 month who have at least one copy of 97 mutations that have proven to be responsive to Kalydeco.

With this approval, approximately 2,250 children in the U.S. will be eligible for Trikafta® (elexacaftor/tezacaftor/ivacaftor), including more than 900 who will have access to a CFTR modulator for the first time. The Cystic Fibrosis Foundation believes it is beneficial to start people with cystic fibrosis on modulators as early as possible to help prevent lung damage and the onset of complications.

During the annual event, volunteers advocated for the PASTEUR Act and the HELP Copays Act, two bipartisan pieces of legislation that could have substantial, positive impact on the CF community.

206 care center directors sign a letter citing clinical consequences if decision moves forward. 

Vertex’s copay assistance changes add an undue burden for people living with an already expensive, challenging lifelong disease.

Bill will jump-start rebuilding of the antibiotics pipeline that is vital to stave off a looming pandemic.

Orkambi^® is now approved for use in children with cystic fibrosis ages 1-2 years who have two F508del mutations. This is the only modulator available to very young children with these mutations.

More than 60 teens from across the country — 25 of whom live with cystic fibrosis — participated online and on Capitol Hill in the Foundation’s Teen Advocacy Day to advocate for the CF community.