I recently attended the Cystic Fibrosis Foundation Lung Transplantation Summit. Many of the areas for improvement cited by the experts matched what I have seen as the mother of a two-time double-lung transplant recipient.
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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.
One of the questions that we ask our representatives during the Foundation's signature advocacy event, March on the Hill, is to join the Congressional CF Caucus. Here is my story of what happened when I (accidently) asked a senator to join that caucus.
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.
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.
The U.S. House of Representatives has passed the American Health Care Act (AHCA), legislation that fails to adequately protect people living with cystic fibrosis.
I made it onto the transplant list after first being rejected. After 18 months of waiting, I got the call that my new lungs were waiting for me.
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.”
I did the research. I asked the questions. I thought I knew what to expect when I had a double-lung transplant. I was surprised by what I learned.