Last month, Senator Chuck Grassley (R-Iowa) and I partnered to create the Cystic Fibrosis Caucus in the U.S. Senate. We are working toward a day when CF stands for “Cured Forever.”
A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.
Sr. Vice President for Policy and Community Affairs Mary Dwight reflects on the passage of the Ensuring Access to Clinical Trials Act (EACT) and what it means for the community.
March on the Hill brings a mix of new and familiar faces to Capitol Hill every year. The connections and stories that our advocates share with their elected officials are making lasting impressions that impact the entire CF community. And as this event has grown, so too has the cystic fibrosis story.
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 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.
I didn't always think that Teen Advocacy Day could make a difference. Turns out I was wrong.
As Congress debates how to stabilize the health insurance marketplaces, several proposals would directly improve the ability of people with cystic fibrosis to access high quality, specialized care.
With several successes for the cystic fibrosis community over the past several months, advocacy is as important as ever to preserving our progress and working toward a cure.