Site Search
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.
As a volunteer, you’ll join thousands of people across the country who are helping add tomorrows to the lives of people with cystic fibrosis.
I began fundraising and raising CF awareness soon after my son, Aidan, was diagnosed as a baby. After years of successful fundraiser walks, Aidan asked me to stop — opening my eyes to the difference between being a mom of someone with CF and being the person who is living with CF.
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.
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.
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.