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.
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Traveling with a kid with cystic fibrosis is better if you plan ahead, get organized, and create a schedule -- but always be able to roll with the punches if that schedule changes.
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.
I decided that I wanted to live on the Caribbean island that I grew up on. Although it takes some planning and work, I'm thriving there.
Watch how teens advocated on behalf of their friends and family with cystic fibrosis on Capitol Hill during the 10th annual Teen Advocacy Day.
After three surgeries to fix a collapsed lung, I still managed to travel abroad. It took a lot of planning, help from family and friends, and simply not caring about what other people think.
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.