My service dog, Jasper, and I relocated across the country and began to find our footing in our new home just before devastating forest fires started spreading around the area. Now, I feel more grateful than ever for the irreplaceable things in life, like Jasper.
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The Foundation’s commitment to these principles will continue to be a cornerstone of the Foundation’s work to advance our mission in 2023.
Although she has two CF mutations, my daughter does not have cystic fibrosis. She has CFTR-related metabolic syndrome. She’s healthy now, but what about the future?
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.
When I was in college, I wanted to do it all and my health wasn’t as much of a priority anymore. I learned to accept that things will not always go according to plan and to integrate routine in my life to ensure my health comes first.