After being the primary caregiver to my son for so long, I was surprised by the many emotions that came with his transition to adulthood. But I’ve learned these complicated feelings are just an opportunity for us to grow closer.
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I thought I was well-prepared to have my third baby boy, but when Oliver was diagnosed with CF, everything I knew went out the window. Though the journey has been isolating at times, my family has found our new normal with support from others in the CF community.
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.
We couldn’t wait to take our daughter home from the hospital. But when the time finally came to bring my daughter home, I began to lose confidence in myself as I tried handling all the medications and formula. With time, I built a great routine for my family and learned some tips and tricks to share with other new parents.
To date, the CF Foundation has funded more than $1 million to programs created by and for the CF community.
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.
Five Feet Apart, a movie about two teens with cystic fibrosis, was released in the U.S. in March 2019. The CF Foundation was not involved in the production of the film. However, we are hopeful that the movie will provide a positive opportunity to increase awareness of CF and the challenges people with CF face living with their disease.
Our hearts stopped when we first heard that our grandson, Jase, had cystic fibrosis. We didn't even know what it was. However, we have learned a lot along the way and have gotten used to rolling with the ups and downs of this disease.