Caring for somebody with CF used to be a lonely journey. But that changed after I attended the first Volunteer Leadership Conference (VLC). I have attended the conference every year, and this year as a co-chair of the 15th VLC, I'm welcoming everybody to livestream it so we can share and learn together.
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By educating elected officials and other government decision-makers on the needs of the cystic fibrosis community, the Cystic Fibrosis Foundation works to shape public policy to help our efforts to cure CF and provide all people with CF the opportunity to live full, healthy lives. Below find a listing of our archived state and federal statements, letters, and regulatory comments from 2018–June 2023.
After my son was diagnosed with cystic fibrosis, I knew I wanted to do more to fight for a cure. That's when I decided to start Charleston Mom Prom, a Passion Fundraising event that has raised thousands of dollars for CF, while allowing us moms to have a night on the town.
Although my wife, Wendy, passed away eight years ago, I continue to raise funds for cystic fibrosis to keep her memory alive.
The Cystic Fibrosis Foundation believes in empowering our community to advocate for the needs of people with cystic fibrosis. During an election cycle, it's important to ask questions of candidates to understand how their positions would impact the CF community.
Show your support for the Cystic Fibrosis Foundation and the cystic fibrosis community while engaging your local community and customers through a cause marketing campaign.
Our dream for our daughter, Eden, is the same one that parents have for their kids who don't have cystic fibrosis. We want her to be happy and realize her true potential.
The night of our first cystic fibrosis-related fundraising gala was memorable in more ways than one. Thanks to new friendships, I got the chance to honor my daughter with CF in a special way.
Each year, Great Strides Ambassadors inspire walk participants across the country and are the face of the adult cystic fibrosis community. Meet the 2017 Ambassadors, Lea Faraone and Willem Wery, and learn why they stride for CF.
I had a lung transplant earlier this year and, although I'm able to do more physically than I could before my transplant, I still have cystic fibrosis. I still need support -- support from the CF community, from the CF Foundation, and from you.