News

A new CFTR modulator treatment called Alyftrek has been approved for people with CF ages 6 and older who have CFTR mutations that are eligible for Trikafta, as well as 31 other rare mutations that have not been approved previously for any other CFTR modulator.

The U.S. Food and Drug Administration (FDA) today approved the expansion of Trikafta (elexacaftor/tezacaftor/ivacaftor) to people with cystic fibrosis ages 2 and older who have at least one of 94 rare mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene.

Results underscore the widespread challenges faced by individuals with cystic fibrosis in managing health care expenses.

The Cystic Fibrosis Foundation is funding the development of a gene editing therapy that is designed to use ReCode’s tissue-specific delivery vehicle to transport gene editing cargo to the lung cells in people with cystic fibrosis.

Through grants, advocacy, and the development of a consensus guideline, the Cystic Fibrosis Foundation continues to advance its Newborn Screening Initiative, pushing for better newborn screening practices to curb delayed diagnoses and further progress health equity.

The Foundation and Bakar Labs will support Positivo Biotechnology as it pursues novel genetic therapy delivery technologies for people with cystic fibrosis.

Four programs designed by and for the CF community to support meaningful connections. 

More than 70 teens from across the country — a third of whom live with cystic fibrosis — urged their members of Congress to pass the PASTEUR Act before the end of the year.

Community feedback highlights the importance of CF care teams, in-person CF care, and telehealth.

Long-standing volunteers Kate O’Donnell and Amy Barry to co-chair major gift and planned giving campaign, continuing the legacy of beloved philanthropic leader Joe O’Donnell