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.
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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.
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?
My friendship with Judy, who had cystic fibrosis, helped me see how I could accomplish my career goals despite my own chronic illness. Unfortunately, she died six years ago, but her inspiration lives on, and I know she would be proud of me.
CEO pledge is part of the Foundation’s ongoing commitment to strengthen the organization and better serve all people with CF
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.
As an adult with cystic fibrosis, I know I am blessed to be healthy right now. I find joy in spreading awareness of CF and encouraging others to follow their dreams no matter what.