CF Foundation Hosts 15th Annual Volunteer Leadership Conference

More than 600 people attended the Cystic Fibrosis Foundation's annual Volunteer Leadership Conference in Washington, D.C., on March 16 and 17.

March 29, 2018 | 3 min read

Hundreds of dedicated volunteers from across the country arrived in our nation's capital to participate in March on the Hill and the Cystic Fibrosis Foundation's 15th annual Volunteer Leadership Conference (VLC). More than 600 people attended VLC in person and hundreds tuned in via livestream. The conference was led by 2018 co-chairs Bonnee Binker of Miami, Fla. and Paul Motenko of Mission Viejo, Calif. with the theme “teamMATEs: Together Until It's Done.”

Paul Motenko (left) and Bonnee Binker led the 15th annual Volunteer Leadership Conference.

Binker and Motenko shared powerful personal stories, discussing how CF has affected them and their loved ones. The dynamic co-chairs rallied the audience throughout the conference, encouraging attendees to never give up until it's done.

Michael Boyle, M.D., senior vice president of therapeutics development, and Bill Skach, M.D., senior vice president of research affairs, kicked off the conference by highlighting the remarkable medical and scientific progress underway, including developments that demonstrate researchers' increased understanding of how to effectively treat the underlying cause of CF. Drs. Boyle and Skach also spoke about the Foundation's focus on developing therapies for treating and preventing CF complications in an effort to improve the quality of life for those living with this disease today.

The audience was especially captivated by a presentation from the Foundation's senior director of clinical affairs, Al Faro, M.D., about the innovative CF Lung Transplant Initiative, which aims to improve the delivery of lung transplant clinical care and outcomes over time.

Melissa Shiffman, who has CF and serves as a tenacious advocate for others living with the disease, led the virtual panel, “Our CF Story: When Life Doesn't Go as Planned,” which featured Cheriz Kunkel and Danny Bessette. Both Kunkel and Bessette shared personal stories about their lives with CF, which often can present unexpected challenges. Kunkel, who spoke from her hospital room after one such unexpected development, bravely shared her decision to become a foster parent. Bessette followed by talking about his remarkable journey toward receiving a lung transplant.

Melissa Shiffman (left) hosted a virtual panel, “Our CF Story: When Life Doesn’t Go as Planned,” which featured Danny Bessette (center) and Cheriz Kunkel.

The day ended in celebration, when several outstanding individuals and corporate sponsors were presented with awards to recognize their tremendous support in the fight against cystic fibrosis. Read more about the 2018 VLC award winners.

From left to right, Cam McLoud, chair of the CF Foundation’s Board of Trustees, Joe O’Donnell, and Preston W. Campbell, III, M.D., president and CEO of the CF Foundation shared a moment onstage.

On day two, attendees learned how to most effectively communicate the CF story -- the best story in medicine -- from Amy DeMaria, senior vice president and chief communications officer. Following Amy, participants heard from Drucy Borowitz, M.D., senior vice president of community partnerships; Mary Dwight, senior vice president of policy and advocacy; and, Bruce Marshall, M.D., senior vice president of clinical affairs. Together, the trio discussed how powerful the CF community continues to be in advancing transformative change -- specifically through community engagement, advocacy efforts, and clinical research.

It was an exciting, action-packed two days. For those who did not attend in person, the Foundation livestreamed the entire event. Check back soon for how to access the archived sessions. 

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