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.
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!!
