When the news of the Trikafta™ approval came out, I was simultaneously excited for people with CF that would benefit and disappointed that another new medicine is passing me by. But, hearing about the next wave of research into a cure for ALL people with CF has me looking forward to the future.
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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.
I am both excited and scared that my son will be old enough to try Trikafta when he turns 12 later this year. In some ways, I can hardly wait to see how he will benefit. But I also know that he might experience side effects, and I don't want him to have any setbacks.
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.
We depend on antibiotics to help us control and get rid of dangerous infections. But, in addition to the near-miraculous power to heal, many antibiotics come with serious side effects, too.
I began taking prescribed medication to control my cystic fibrosis-related pain. Soon, the medication tried to control me.
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.