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.
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.
Since 2011, the Foundation has awarded $2.5 million across 35 different projects to improve cystic fibrosis newborn screening across the country.
Cystic fibrosis affects people of every racial and ethnic group. Of the nearly 40,000 people living with CF in the U.S., approximately 15% are identified as racially or ethnically diverse. Research shows that people of color with CF, particularly people who are Black and Hispanic, experience unique challenges and often have negative experiences that can lead to poorer outcomes. Some of these inequities are referenced in the following data.
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.