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.
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In just four short years, Karen Sani has become the ultimate CF Foundation teamMATE at the Northeastern New York Chapter. She is an inspirational volunteer who motivates everyone around her to support those with cystic fibrosis.
The Cystic Fibrosis Foundation is funding research into gene editing techniques to see if they can be used to fix the mutations that cause cystic fibrosis. One of the most popular techniques is CRISPR-Cas9. To see how this might work for CF, watch this video.
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.
CF demands a parent's time, but childhood lessons taught me that all of my children need my love and attention.
Ever wonder about an aspect of cystic fibrosis that you would love someone to research? Find out how you can submit a question in our first community-driven research project.
There were three important things that my parents did for me while I was growing up that helped me become an independent and positive person.
Learning to help my wife access her port is part of our shared journey with CF. Check out our video for some tips and tricks we’ve learned along the way.
Many people might be put off by the thought of participating in a clinical trial. The increasing life expectancy for CFers like me, however, is a testament to the impact medical research can have on the development of therapies for cystic fibrosis.