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.
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.
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.
Anything that slows down progress in research and the cure for this cystic fibrosis is my sworn enemy. Learn why the Improving Access to Clinical Trials Act (IACT) matters for our progress in the fight against CF and what you can do about it.
Watch how teens advocated on behalf of their friends and family with cystic fibrosis on Capitol Hill during the 10th annual Teen Advocacy Day.
For people with cystic fibrosis, our story is the most powerful tool we have to stand up for ourselves and fight for our needs. Although I can't always be there to share my story with legislators in person, I'll be joining many others from the CF community for our first March on the Hill Online Day of Action to make my voice heard.
While we often see politicians on the campaign trail, there's another side to them that the public doesn't always see. By sharing my story, I've made real connections with my state representatives to help them better understand CF and positively impact my son's future.