VLC Celebrates the Victories Made in the Fight Against CF

For those who haven't experienced it, the Cystic Fibrosis Foundation's annual Volunteer Leadership Conference is a magical time when everyone can get together and share moments of hardship and triumph in the fight against cystic fibrosis.

| 4 min read
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Julie Riedy
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There's a magical time of year when my hope is restored, friendships become more like family, and I can look around the room and my heart is filled with love. If you've attended, I bet you already know what I'm talking about -- the Cystic Fibrosis Foundation's Volunteer Leadership Conference (VLC).

This annual conference just celebrated its 17th anniversary in a very different format than in years past. Nothing is more important than protecting the health and wellbeing of people living with CF, volunteers, and the Foundation staff. Because of COVID-19, the decision to transition to an online format was made just two weeks before the conference date. I'm sure this was a very difficult, heart-wrenching decision for Dr. Mike Boyle and the Foundation to make but, undoubtedly, it was the correct one.  

As a result, instead of being together in Washington, D.C., on March 13, more than 600 volunteers gathered virtually to support one another from all over the United States. From Drs. Mike Boyle, JP Clancy, Bill Skach, and Ann Field, we learned important medical updates about COVID-19 and the Foundation's vision to find a cure for all those living with CF. Executive Vice President and Chief Operating Officer Marc Ginsky encouraged volunteers to continue to be “relentless” in our determination to fight for a cure. The volunteer leadership team, led by Board of Trustees member Mike Beatty, was recognized and applauded for its hard work in the last year. Melanie Abdelnour and Tannaz Motevalli, adults with CF, shared raw, impactful experiences and gave the group insight into how a support squad can help adults (and children!) living with CF. More so than ever, the online chat was overflowing with comments from volunteers tuning in. 

From all the presenters, we heard stories of hardship and triumph, and my fire to fight this disease until it's “really, totally done” for every person was fueled.

I am still humbled to have co-chaired this year's VLC with Ray Poole, another CF spouse. It was a very significant year in the world of CF. With the FDA approval of Trikafta™ and the announcement of Path to a Cure, the past 12 months have been more than I could have wished for. During VLC, the volunteers heard about all the latest advancements and plans, and while I listened sitting next to both new and longtime friends, my heart was full of gratitude.

Chad, my 38-year-old, double delta husband, should not have lived to a double-digit birthday. He should not have been able to swim on the swim team or make it to college and play lacrosse there. We should not have been able to get married, have two sons, and live the happy and full life we are living.

But the Foundation, the doctors, and the visionaries were determined to not let CF win.

Together, they joined forces and made such a difference, making my life with Chad possible. I cannot thank the work of the Foundation and the volunteers who came before me enough. It's mind-blowing to me that CF has come so far that spouses of CF fighters are not only attending VLC but co-chairing. We've come so far.

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But also, while broadcasting from the Foundation in Bethesda, my heart was not satisfied. CF is not done. We have come so, so far, but we are nowhere close to done. I'm tired for Chad -- tired of the long hours he spends on breathing treatments and tired of the worries we share about our future and the possibility of what it could mean for our sons, Liam and Tate. I'm scared that we will lose more children, moms, dads, brothers, and sisters before CF is truly done. Really. Totally. Done for Every. Single. Person. I know I'm not alone in my feelings -- and also know I have a relentless group fighting at my side.

VLC is magical. More than 600 people joined together virtually to fight CF. We have the very best community out there. We are united, and we are stronger together. 

Ray and I already are looking forward to hosting in person next year in San Antonio, Texas! Get your cowboy/girl boots ready!! 

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Julie is a spouse to her husband, Chad, and an advocate for all things CF. She and her husband are inspired and motivated by volunteering with the Cystic Fibrosis Foundation in numerous ways. Formally a co-chair of a 20+ year dinner dance, Julie is now a mentor with Community Voice, a Tomorrow's Leader, the leader of a Great Strides team, is serving as the 2022 Volunteer Leadership Conference Co-chair, and has been featured on the Breaking Through podcast. Julie was born in Michigan and currently living in Alexandria, Va., where she is a mom to two boys and a full-time teacher. She enjoys running, going on adventures with her family, and scouting out local food gems. Follow Julie and her Great Strides team online on Instagram @inspire_spero and @julieriedy or on Twitter @julie_riedy.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.