In 1986, I decided to walk across America to raise awareness of CF. Positivity, my martial arts training and the people I met kept me going.
Site Search
CF MiniCon: Transplant is a virtual event for people with cystic fibrosis, their family members, and caregivers to learn about advanced lung disease and explore all stages of the transplant process.
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.
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 Foundation-accredited care centers play an important role in research. They collect information on the health status of their patients with CF who agree to participate, and report that data to the CF Foundation Patient Registry. The information is available in aggregate to the CF community each year through the Data Report, the Highlights Report, and the Care Center Finder.
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.