This year our CF Foundation employee Great Strides team adopted a “Star Wars” theme and, believe me, we went all out to make the experience extra special and out of this world. See for yourself!
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Although I had been told that my coughing would stop, I wish I had known more about the transformative change that Trikafta® would have on my life. It has almost made me wistful for the time when I was sick, back when I was more in tune with what my body was experiencing.
Now that I am feeling healthy on Trikafta®, I no longer feel special for thriving despite the challenges of cystic fibrosis. I don’t feel like I belong in the CF community anymore, and I miss that sense of camaraderie that comes from a shared struggle.
My wife and I were heartbroken when our daughter, Ruth, was diagnosed with cystic fibrosis as a newborn. But CF can’t stop us from being optimistic about what the future holds for our family.
I began volunteering as a way to support my cousin with CF. But over time, I discovered the community and impact that can come from even the smallest efforts.
Advances in cystic fibrosis care have been life-changing for me, and I’m grateful to breathe easier with a CFTR modulator. However, I began to experience new issues in the past few years, and I am left wondering if it’s a side effect of the CFTR modulator or something else.
We’re highlighting three creators who are helping raise cystic fibrosis awareness. They’re voicing the variety of ways that people experience the disease by sharing a part of their life through their works.
Driven by a career in community health and a late cystic fibrosis diagnosis, I discovered my purpose through volunteering with the CF Foundation. Inspired by the power of connecting with my peers, I went on to develop my own program designed to support other adults in the CF community.
Cystic fibrosis defined my identity for many years until I participated in clinical trials for Trikafta®. As my health improved, I struggled to figure out what this meant for my sense of self. This experience motivated me to help other young adults with CF navigate the many changes that modulators can bring.
I have learned a lot about myself in the three years since I started Trikafta®. Even though I am healthier, I feel less connected to the cystic fibrosis community and my care team.