Learn four tips for telling your cystic fibrosis story so people are listening, engaged and inspired to take action.
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Paul participates in Great Strides, advocates on the Hill and has even launched a CF fundraiser. Oh, and he's only 18.
Read how Blake Leyers helps put a face on this disease by sharing her brother's story.
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.
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.
I have enjoyed pretty good health, so I have tried to keep my cystic fibrosis on the back burner while I pursue my passions. Sometimes, though, CF intrudes, reminding me that it’s still here.
My son, Keith, was diagnosed with pancreatic cancer after an initial focus on CF as the cause of his health issues. With people with CF living longer, we need more awareness of pancreatic cancer in CF individuals due to the potential increased risk.
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.