A few weeks ago, while contemplating the trip I was about to take to Washington D.C. to join my fellow advocates for the Cystic Fibrosis Foundation's tenth annual March on the Hill, I challenged myself to "think big." So I sat down in front of the computer and wrote a letter to the President of the United States.
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Sometimes, being the “squeaky wheel” is the only way to make a positive change.
Lukas Daskas found something in the Cystic Fibrosis Foundation's Teen Advocacy Day that he had been searching for his whole life: a sense of community and understanding by others who know what it's like watching a loved one battle cystic fibrosis.
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.
Now that I am feeling healthy on Trikafta®, I no longer feel special for thriving despite the challenges of cystic fibrosis. I don’t feel like I belong in the CF community anymore, and I miss that sense of camaraderie that comes from a shared struggle.
Despite the scars and appearance-altering side effects of medications, I am proud of what my body has survived in the face of cystic fibrosis. Being a brand ambassador has lifted my spirits and led to a greater acceptance of my body, which has withstood a double-lung transplant, a feeding tube, and a port.
My voice plays an important role in managing my cystic fibrosis. Breathing techniques that I have learned as a singer help me perform pulmonary function tests and my voice can signal a change in my health — if I listen to it.