My friendship with Judy, who had cystic fibrosis, helped me see how I could accomplish my career goals despite my own chronic illness. Unfortunately, she died six years ago, but her inspiration lives on, and I know she would be proud of me.
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CEO pledge is part of the Foundation’s ongoing commitment to strengthen the organization and better serve all people with CF
Orkambi® is now approved for use in children with cystic fibrosis ages 1-2 years who have two F508del mutations. This is the only modulator available to very young children with these mutations.
As an adult with cystic fibrosis, I know I am blessed to be healthy right now. I find joy in spreading awareness of CF and encouraging others to follow their dreams no matter what.
Now that I’m in my 40s and post-lung transplant, I’m beginning to embrace the realities of aging with cystic fibrosis. Despite the gray hairs and deepening wrinkles, I know that I am lucky to be looking forward to mammograms and menopause.
Vertex’s copay assistance changes add an undue burden for people living with an already expensive, challenging lifelong disease.
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.