I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.
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Proposed policies would impose significant barriers and add burden for people with CF
More than 60 teens from across the country — almost half of whom live with cystic fibrosis — advocated for support of the PASTEUR Act.
Melanie Lawrence, an adult with cystic fibrosis, was selected to testify before a Senate Health, Education, Labor and Pensions subcommittee regarding the impact of antimicrobial resistance on patients who face heightened risk of infections, like those with CF.
Advocacy is impactful at all ages, but the term can sound intimidating. It implies effort, time, commitment, politics, and publicity. As a 30-year-old with cystic fibrosis, I am currently an active member of the CF community, but I was not always aware of the benefits, power, and impact of advocacy.
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.
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.
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.
Since 2011, the Foundation has awarded $2.5 million across 35 different projects to improve cystic fibrosis newborn screening across the country.