Carbon Biosciences is the first company to publicly launch from the Foundation’s collaboration with Longwood Fund and the first to work alongside CF Foundation researchers at the Foundation’s therapeutics lab
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I didn’t realize how important my cystic fibrosis care team was — or how they had my back — until I stayed in a hospital where the staff had little knowledge of the needs of people with cystic fibrosis.
At first, it was easy to get my son to do his cystic fibrosis treatments. But as he got older, he started to hide his medications, rather than take them. I finally learned how to get him to see the importance of taking his medications.
I spent 2020 in COVID-19 quarantine and in the hospital separated from my family while waiting for transplant. I'm very grateful that the call came and I have new lungs -- and a new life.
I stopped exercising regularly after losing my mother (and workout partner) to cancer. Once I started doing virtual fitness classes during the pandemic, I began to feel stronger and healthier, both mentally and physically.
Cooking for a family of three -- one of us with CF and all of us having different diets -- makes mealtime complicated. It's taken some time, but I finally found the key to satisfying our whole family's needs at dinnertime.
After I had to go on disability to focus on taking care of my health, I got involved with the CF community and volunteered with Community Voice. Little did I know it would help me when I needed it most.
Despite my cystic fibrosis, my relationship with my daughter continues to grow stronger each time we are together. She doesn't care about what I can or can't do physically. She just loves me unconditionally.
A few years ago, it took one small staircase for me to realize that my health was on the decline. I look back now on that moment fondly, though, because it helped me learn to listen to my body.
Although I'm glad that my two children with cystic fibrosis will soon have the opportunity to try Trikafta, I am also a little worried about whether they will have side effects and how well they will do on the drug long-term.