I was thrilled to learn earlier this month that Emily Kramer-Golinkoff, a young woman living with cystic fibrosis, would be honored by the White House as a “Champion of Change” for her work to advance the field of personalized medicine.
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An inside look at the inspiration and purpose behind our new CF Community Blog.
Our top blog posts of 2015 focus on big decisions, difficult struggles and small battles against CF.
My brother’s optimism despite living with cystic fibrosis has inspired me to advocate, share his story, and use my voice to push for positive change.
I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.
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.
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.