Blog

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. 

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’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.

When the pandemic started, I started to feel lost and disconnected. That changed when I was introduced to a new program from the Cystic Fibrosis Foundation that taught me how to share my CF story with confidence. 

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.

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.

Although I had heard of cystic fibrosis, I never knew anything about the disease until a chance meeting with a member of the CF community during a networking event. Since then, I have provided donations to CF events and am in awe of the determination and attitude that people with CF have about life.

Since I could remember, my sister shared her CF story to raise awareness, and she inspired me to do the same. Now, with this year's Teen Advocacy Day, we finally get to advocate together.

Here's a snapshot of six works we're spotlighting from members of the CF community. Whether they shared their story through writing or through song, their work has been shaped by their experiences of living with CF.

For a new parent of a child with cystic fibrosis, it can be an enormous help to speak to other parents in the same situation. The support and shared knowledge offered by another mother made a huge impact on me when my newborn son was diagnosed with CF.  

Although I have no personal ties to people with cystic fibrosis, I developed my own connection to the disease -- first as a biology student understanding the science behind CF, and second as a member of the Tomorrow's Leaders College Program, where I learned about the people behind the statistics.

My partner, Jan, was a CF fighter for 50 years. She lived an amazing life and celebrated her lung transplant to the fullest. She passed away a few months ago and I'm honored to keep her fight against CF going strong.