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
The additional funding will support a Phase 2 clinical trial for an inhaled antisense oligonucleotide drug for people with cystic fibrosis who have the splicing mutation 3849+10Kb C-to-T.
Revised approach to lung function reporting is shown to be more scientifically accurate and may reduce health disparities.
This year’s program marked the largest in-person advocacy event in the Foundation’s history.
Funding will support a Phase 2b trial of phage therapy for chronic Pseudomonas aeruginosa lung infections.