When my daughter was diagnosed with cystic fibrosis, I found it difficult to explain this disease to my parents in Spanish, and I also felt alone in my rural community. That is why I think it is important to bring CF awareness to the Hispanic community.
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As a black man with cystic fibrosis, I am in a minority group within a minority group. I waited my whole life to find someone I could easily relate to until I happened upon a Facebook group for post-transplant patients.
My children’s experiences being African American with cystic fibrosis motivated me to speak out and ignite change for families who are Black, Indigenous, and people of color (BIPOC) in the CF community.
The Cystic Fibrosis Foundation, alongside the CF community, urges Congress to pass the PASTEUR Act and the HELP Copays Act.
In 1955, the Cystic Fibrosis Foundation was founded by a group of concerned parents who wanted to raise awareness of CF. The strength of the CF community has driven forward incredible advancements in research and care. It’s important to remember that one voice can make all the difference.
Living with CF means I quickly became familiar with the patient side of the health care field. My experiences in the hospital have motivated me to become the kind of nurse that listens to and advocates for their patients.
Alongside the cystic fibrosis community, we advocate for policies and programs that promote access to highly specialized CF care and that help advance research and drug development.
Since 2011, the Foundation has awarded $2.5 million across 35 different projects to improve cystic fibrosis newborn screening across the country.