I have been attending the Cystic Fibrosis Foundation’s (CFF) Volunteer Leadership Conference (VLC) since 2015. This conference is attended by hundreds of volunteers, along with staff of the CFF, and is a networking conference that allows us to share information, to celebrate advancements, and re-commit to the ultimate mission, to find a cure for cystic fibrosis.
There are several awards presented at the VLC, including the Alex Award. The Alex Award was established by the late Frank DeFord in honor of his daughter Alex who passed away from cystic fibrosis at the age of 9. The award honors a person with cystic fibrosis who gives back to the greater cystic fibrosis community.
At the VLC, the person receiving the Alex Award leads one of my favorites parts of the conference – a panel of some sort about living with cystic fibrosis. I have been fortunate to know and work alongside several of the past Alex Award winners. I wanted to consolidate a listing of those that I have gotten to know, and to include all those that I was in attendance for their award presentation.
2014: Marissa Benchea
While I wasn’t attending VLC in 2014 when Marissa received her Alex Award, I met her in person in 2015 when I attended my first March on the Hill Advocacy event. We have several things in common (weather and cats among them!), and I was thrilled that I would have the opportunity to work alongside her again when she became an Advocacy Co-Chair in 2023.
2015: Kristin Dunn
Kristin received the Alex Award at my first VLC. I enjoyed hearing from her during her panel, and was inspired by her work with the cystic fibrosis community.
2016: Andy Lipman
Andy speaks and advocates strongly for the mental health needs of the cystic fibrosis community. He has written a few books, two of which highlight CF Warriors – both those with CF and those champions of the the CF community.
2017: Linda Bowman in Dallas
I got to know Linda via social media ahead of the 2017 VLC. I found her panel at the VLC in Dallas to be especially poignant as she and her husband Mike shared their journey.
2018: Melissa Solomon Shiffman in DC
I got to know Melissa when she was the CFF Advocacy Co-Chair in the years leading up to her being presented the Alex Award.
2019: Somer Love in San Diego
I had gotten to know Somer thru her social media posts and videos. It was especially fun having her at the VLC held in San Diego, since that is my “local” chapter!
2022: Melanie Lawrence in DC (delayed due to covid)
2023: Chad Riedy in Denver
Chad is another person I had the pleasure of working along side in advocacy circles when he was one of the Co-Chairs for the Advocacy efforts. His wife Julie was a Co-Chair of the VLC in 2020/2021/2022.
2024: Shelby Luebbert in DC
I’ve gotten to know Shelby online, in part because she once lived in Hawaii. When I learned she was getting the Alex Award, I was thrilled that I would get to meet her in person!
2025: