Cystic fibrosis kept me from thinking that I’d ever get married, but my improved health made my dream wedding possible. Three approaches helped me manage my CF while celebrating the happiest day of my life.
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During the annual event, volunteers advocated for the PASTEUR Act and the HELP Copays Act, two bipartisan pieces of legislation that could have substantial, positive impact on the CF community.
Delivery of genetic therapies to affected tissues is a key challenge to developing new treatments for people with cystic fibrosis. In addition to investing in viral delivery and lipid nanoparticles, the Cystic Fibrosis Foundation is looking at the potential of a relatively new approach to delivery using an exceptionally small synthetic molecule called a polymer nanoparticle.
After I was told to stick with sprints because my cystic fibrosis would make it hard to become a distance runner, I was determined to prove that this disease won’t hold me back from my goals.
The investment will go toward finishing a Phase 2a clinical trial for an anti-infective to treat chronic infections in people with CF.
At 26, I was in and out of the hospital with bouts of pain and coughing up blood, with doctors telling me I had pancreatitis. It took a trip to a new hospital — and advocating for my health — before I finally got my correct cystic fibrosis diagnosis.
I was diagnosed with cystic fibrosis late; and the anger I felt was contagious for my son, who was dealing with his own diagnosis. But, I found support and am now focusing on the things in my life that I can control.
Funding will support preclinical research and early-stage clinical trials
The Cystic Fibrosis Foundation’s investment will go toward conducting preclinical research on a novel gene delivery vehicle. If successful, this gene delivery method could overcome some of the biggest challenges to delivering a gene therapy into the lung cells of people with cystic fibrosis.
As I continue to realize the benefits of Trikafta® and my daughter grows up and needs me less, I feel as though I’m losing key parts of my identity — being a person with cystic fibrosis and a mother. However, I’m also finding I have room to let myself grow and explore different sides of myself.