teamMATEs for a Cure: CF Foundation Hosts Largest Annual Volunteer Leadership Conference Ever

The Cystic Fibrosis Foundation took the Volunteer Leadership Conference (VLC) on the road this year and hosted the event in Dallas on April 7 and 8.

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More than 600 attendees traveled to this two-day annual conference to celebrate the impact and the power of volunteers when they work together and to highlight important CF Foundation achievements from the past year. The 14th annual Volunteer Leadership Conference (VLC), themed “teamMATEs (Make Adding Tomorrows Easier) for a Cure,” was the largest volunteer conference in the Foundation's history and saw many firsts. Co-chaired by Ginger Birnbaum and Mike Beatty, it was the first VLC to be held outside of the Washington, D.C. area, and it was the first time that so many people attended in person, with hundreds more tuning in online via live stream. Mike remarked, “I guess it's true what they say, everything is bigger in Texas.”

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Dr. William Skach delivered his medical update at the 2017 Volunteer Leadership Conference as Dr. Michael Boyle and Dr. Preston W. Campbell, III looked on.

On day one of the conference, Drs. Michael Boyle and William Skach unveiled the latest developments in CF research at a session called, “Advances in Research: Leaving No One Behind,” which was a medical update showcasing the tremendous progress being made for those living with CF. They talked about their goal to ensure that no one with CF -- regardless of how rare their mutation may be -- will be left behind. Specifically, the doctors discussed the promise of transformational scientific advancements, such as gene editing.

Following was Marc Ginsky, the Foundation's executive vice president and chief operating officer. Having traveled to nearly every Foundation chapter in the country, he shared his first-year perspective, as well as what he hopes to achieve in the coming year.

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Alex Award winner Linda Bowman led an emotional “Our CF Story” panel. (Clockwise from top left, Mara and Sharon Cray; Linda Bowman; Paige Montgomery and Charlie Nettles; and Katie Lyons)

For many, the highlight of the day was the “Our CF Story” panel, led by Linda Bowman, an adult with CF and this year's winner of the Alex Award. She and her husband, Mike, courageously revealed how CF has impacted their lives and their marriage, discussing the challenges and the triumphs they've experienced in the face of such a tough disease.

Also on the panel were Mara Cray, a young adult with CF, and her mom, Sharon. The effervescent mother-daughter duo talked about Mara's transition to college and Sharon's lessons in “letting go.” They were joined by Paige Montgomery and her siblings Katie Lyons and Charlie Nettles, who shared their journey as a family when Paige received a CF diagnosis as an adult. The day concluded with the annual awards dinner, celebrating outstanding volunteers and corporate sponsors.

On day two, attendees enjoyed a range of break-out sessions, featuring best practices in fundraising, social media, and advocacy efforts. New this year were the “Medical Hot Topics” sessions, during which attendees both in Dallas and via the live stream could learn about lung transplantation, advances in correcting CFTR mutations, Compass, and clinical trials.

For those who were not able to attend in person, the Foundation live-streamed the entire event, including all of the break-out sessions and Medical Hot Topics. If you missed a portion of the conference, or would like to view any session again, watch archives of the live-streamed videos on the CF Foundation’s YouTube channel.

Learn more about this year's VLC award recipients.

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