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.
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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.
Quarterly visits to a CF Foundation-accredited care center are the foundation of your treatment plan. By partnering with your care team, you can also adjust your treatment plan as new therapies become available, or your needs change over time.
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.
When it comes to my cystic fibrosis care, some might say that my situation is a bit unique. Although having not one -- but two -- CF care teams can be challenging, I strongly believe that has made me a better, smarter, and more engaged patient.
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.
The Cystic Fibrosis Foundation would like to thank New York Giants placekicker Josh Brown and Tommy Bahama for their efforts in supporting the search for a cure for cystic fibrosis.
Nine cystic fibrosis care centers were awarded the 2013 - 2014 Cystic Fibrosis Quality Care Award for outstanding service to people with CF and their families at the 28th annual North American Cystic Fibrosis Conference in Atlanta.
Although my wife, Wendy, passed away eight years ago, I continue to raise funds for cystic fibrosis to keep her memory alive.
It was the year of 1957 when Phyllis Kossoff, one of the earliest volunteers of the Cystic Fibrosis Foundation and mother of a child with CF, found herself standing before a room of women, asking for help.