When I was growing up, having a positive cystic fibrosis diagnosis did not automatically mean that I got the care and treatments I needed. It wasn't until my 22nd birthday, when I was in poor health, that I decided I needed to get healthy and speak out for myself.
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My advice to all of you … CONNECT, CONNECT, CONNECT with others who share your passion in the fight against cystic fibrosis.
Being a part of the CF Foundation has given me so much more than I could have ever imagined. That is why my wife, Nanette, and I have made a commitment to people with cystic fibrosis for years to come by making a legacy gift, an enduring statement of our values.
Today I am proud to introduce More Than CF. Your struggles, your achievements, your routines and the small surprises of your every day breathe life into the Foundation's work. You can get involved by sharing your experiences with us on Facebook, Twitter and Instagram and by searching #morethanCF.
Cystic Fibrosis Foundation Therapeutics Inc. made its first major award last month to advance gene editing research in cystic fibrosis. Editas Medicine Inc. will explore the potential of using what some scientists refer to as “a tiny pair of scissors” to snip out the genetic defect that causes CF.
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.
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.
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.
As a member of the IT department at the CF Foundation, it's easy to sometimes feel disconnected from the people we serve. This is why the Foundation's Speaker Series, which recently featured the story of Sara and Michael Dun, is so meaningful.