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.
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New Bill Would Remove Financial Penalties for Participating in Research Studies
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.
Weeks after my son was diagnosed with cystic fibrosis, I knocked on my local chapter's door to ask what I could do to make a difference.
Last year -- just one week before my 12th birthday -- my doctor reached out to my family and asked me if I wanted to enroll in a clinical trial. Here's why I decided to say yes.
Many people have asked me why I would want to climb the highest mountain in Africa with no climbing experience. The answer is simple: an undeniable love for my daughter, Jennifer, and a determination to raise money for all those living with cystic fibrosis.
Two 2017 Volunteer Leadership Conference attendees, one a veteran attendee and another a newcomer, reflect on their experiences in Dallas, Texas.
The initial sadness we felt when learning that our son had cystic fibrosis quickly gave way to our determination -- as a family -- to react in a productive way.
Back in 2015, my genetic sequencing revealed one nonsense mutation. But recently, I learned I have another nonsense mutation that may not have been identified when my genes were first sequenced. As more mutation-dependent therapies are developed, it’s crucial that people with CF have accurate information so they can make informed decisions.