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.
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Sharing your CF story is one of the most powerful things you can do, but that can be hard for some of us. If you want to use your voice but struggle with how to get started, here are three things that helped me.
In 2011, Cystic Fibrosis Foundation advocates worked to advance cystic fibrosis research and help ensure access to treatment and care for people with the disease.
On March 8, more than 40 Cystic Fibrosis Foundation volunteers from across the nation came together on Capitol Hill to speak out on behalf of their friends and family members with cystic fibrosis.
As part of the Cystic Fibrosis Foundation's 11th annual March on the Hill, more than 100 advocates from 44 states met with nearly 300 elected officials or their staff to help ensure that everyone with cystic fibrosis has access to high-quality, specialized care and adequate, affordable health care.
206 care center directors sign a letter citing clinical consequences if decision moves forward.
During the annual event, volunteers advocated for the PASTEUR Act and the HELP Copays Act, two bipartisan pieces of legislation that could have substantial, positive impact on the CF community.
Bill will jump-start rebuilding of the antibiotics pipeline that is vital to stave off a looming pandemic.