Our community's shared journey makes us unique and unites us in the hardest of times for some and the most hopeful for others.
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Life isn't always full of happy moments. Some are heartbreaking and some are crushing. But through it all, the life Kari and I shared together were the happiest moments of my life. I wouldn't trade them for anything. They were worth every second.
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.
Having spent her career working for a cure for cystic fibrosis, Patty Burks is still not content. She wants to remember her son in a way that makes a difference for others. That's why she has made the CF Foundation a beneficiary of her life insurance policy. This gift to the Foundation meets a need in her heart.
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.
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.”
The CF Foundation's CEO reflects on the passing of Mary Weiss, who helped blaze new trails in the fight against CF.