I struggled emotionally after learning that after negative carrier and newborn screens, my son had cystic fibrosis. I’m now advocating for people with rare mutations.
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My son, who is Black, has cystic fibrosis. It seems like just a normal fact of life, but I have become frustrated with having to convince doctors that he really does have CF. I hope that one day people of color won’t have to have the same experience.
I felt unrelenting hope watching the first plenary of this year’s North American Cystic Fibrosis Conference. As I learned about progress that has been made in sickle cell disease, and how those learnings may help us develop a genetic therapy for CF, it showed me that the CF community is supporting people like me who can’t take modulators.
The Foundation seeks to advance its mission by making improvements in key areas of health equity and outcomes and diverse workforce development.
The Foundation’s commitment to these principles will continue to be a cornerstone of the Foundation’s work to advance our mission in 2023.
I felt so alone as a kid being gay and having CF — there weren’t any role models in the 80s and 90s that I could look up to. Eventually, I found people who understood what I was going through and that helped me feel good about who I was, and who I am today.
CEO pledge is part of the Foundation’s ongoing commitment to strengthen the organization and better serve all people with CF
After years of being treated as an oddity, I want people to acknowledge that I am a Black girl with cystic fibrosis. I want my voice to be heard.
The Foundation, in collaboration with external community advisors, finalizes recommendations in area of Community to help foster more inclusion and improve the experiences of Black people living with and impacted by cystic fibrosis.