When Brady was diagnosed with CF, I felt like I'd been thrown into a river without a paddle. But then I realized my “paddle” was CF advocacy, and it could help steer our boat in the right direction.
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CF Foundation Public Policy interns Shannon, Oakey and Erin share highlights from attending Teen Advocacy Day 2015, where 62 teens from across the country traveled to Washington, D.C., to meet with their Representatives and advocate on behalf of their siblings, friends and relatives with CF.
As Congress weighs budget appropriations, we look at long-term funding for the National Institutes of Health. We decided to sit down with the Foundation's senior vice president of research affairs to learn more about why the work being done at NIH is so important in the search for a cure for CF and other serious, rare diseases.
Last week I travelled to D.C. to serve on a panel discussing the recent developments in precision medicine. I've got to say, it was pretty neat.
For a time, I did not always do my daily cystic fibrosis treatments. Over time, I've come to see them as a necessary part of my daily routine.
Although I resisted it at first -- and wrestled with what it said about my worth as a person -- going on disability has helped me become healthier, happier, and more fulfilled than I was when I was working.
I advocate for my son who has cystic fibrosis by sharing his story to increase awareness. From new friends to legislators, I tell as many people as I can about this disease, how it changes your life, and how we are fighting this thing head on.
In August, CF Advocates visited their representatives in the U.S. House as part of the CF Foundation's first ever national summer advocacy campaign, “House Calls.”
Because of the threat to my health caused by COVID-19, I had to give up my dream job as a nurse practitioner. Now I am asking for paid leave expansion.
After careful thought, I decided to add medically prescribed cannabis to my care regimen. After using it for six months, I've noticed an improvement in both my mental and physical health.