My son, Arjun, has had the deck stacked against him in some ways. He was born early, with cystic fibrosis, and needed surgery. His resilience, and my hopes for his future, keep me inspired.
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As I reflect on the 30th anniversary of Great Strides and my 35-year journey living with cystic fibrosis, I celebrate all the CF community has accomplished together and am thankful to be able to share my story as a 2018 National Ambassador.
With another fantastic Volunteer Leadership Conference (VLC) in the books, I want to share some of the things we learned and how we can keep the momentum going through National Volunteer Week, and all year long.
After three surgeries to fix a collapsed lung, I still managed to travel abroad. It took a lot of planning, help from family and friends, and simply not caring about what other people think.
If you have cystic fibrosis, don't waste your strength on the travel leg of your vacation. Save your energy for the fun stuff by asking for help when you need it.
Caring for somebody with CF used to be a lonely journey. But that changed after I attended the first Volunteer Leadership Conference (VLC). I have attended the conference every year, and this year as a co-chair of the 15th VLC, I'm welcoming everybody to livestream it so we can share and learn together.
After my son was diagnosed with cystic fibrosis, I knew I wanted to do more to fight for a cure. That's when I decided to start Charleston Mom Prom, a Passion Fundraising event that has raised thousands of dollars for CF, while allowing us moms to have a night on the town.
Although my wife, Wendy, passed away eight years ago, I continue to raise funds for cystic fibrosis to keep her memory alive.
Our dream for our daughter, Eden, is the same one that parents have for their kids who don't have cystic fibrosis. We want her to be happy and realize her true potential.
The night of our first cystic fibrosis-related fundraising gala was memorable in more ways than one. Thanks to new friendships, I got the chance to honor my daughter with CF in a special way.