I had never heard of cystic fibrosis until I received my diagnosis — but learning how to navigate my CF prepared me to advocate for my husband’s medical care and helped me grow as an artist.
Site Search
A chance meeting at a CF conference 12 years ago gave me one of the most valuable gifts: my CF Mama friend group. Since then, we’ve invested time in our friendship and supported each other through the laughs and the tears.
Throughout my life with cystic fibrosis, I never thought about the prospect that I would outlive my loved ones. Now that I have attended some of their funerals, the thought of my own mortality has caught up with me.
Hospice care helped my daughter, Desirée, through her final days.
Addressing variability in newborn screening can prevent missed diagnoses and delays in early care intervention.
After decades of identifying myself as Monique, “the girl with cystic fibrosis,” I didn’t know who I was anymore after Trikafta changed my health for the better.
Carbon Biosciences is the first company to publicly launch from the Foundation’s collaboration with Longwood Fund and the first to work alongside CF Foundation researchers at the Foundation’s therapeutics lab
I didn’t realize how important my cystic fibrosis care team was — or how they had my back — until I stayed in a hospital where the staff had little knowledge of the needs of people with cystic fibrosis.
I have answered questions from many about what cystic fibrosis is, but the question that I really wanted to address was: why do I believe I have CF?
CEO pledge is part of the Foundation’s ongoing commitment to strengthen the organization and better serve all people with CF