CF Community Leaders Share Hope and Inspiration at Volunteer Leadership Conference

On the heels of exciting progress in the fight against CF, more than 500 of the Cystic Fibrosis Foundation's most dedicated volunteers, chapter staff and corporate supporters came together at the 12th annual CF Volunteer Leadership Conference, and hundreds more watched via live stream March 20-21.

March 27, 2015 | 3 min read

Volunteers discussed ways the CF community can work together to sustain progress in the research and care while helping improve the lives of people with the disease.

“It's so inspiring to be around so many who are all working for the same cause: a cure to cystic fibrosis,” said volunteer Jen Pontz-Miller of the CF Foundation's Central Pennsylvania Chapter. “Coming to this conference reminds me that my family and I are not alone in this fight.”

The conference was led by Volunteer Leadership co-chairs Angie Kinney, of the Western Pennsylvania Chapter, and Katrina Young, of the San Diego and Imperial Counties Chapter, who share a common connection as mothers of children with the disease. 

In a special “State of the Science” presentation, volunteers learned about latest developments in the Foundation's research and care programs from Robert J. Beall, Ph.D., CF Foundation president and CEO, Preston W. Campbell III, executive vice president for medical affairs, Michael P. Boyle, M.D., FFCP, director, Adult CF Program/Associate Professor of Medicine at The Johns Hopkins Hospital, and William R. Skach, M.D., vice president for research affairs. Volunteers shared their excitement by live-tweeting highlights of the presentation. “Science update at volunteer leadership conference - fav moment of every year! Blown away!” co-chair Angie Kinney said on Twitter.

In a moving virtual panel discussion, three CF adults shared their personal challenges living with the disease and how they give back to the community. Somer Love of Utah, Andy Lipman of Georgia and Kristin Dunn of New Jersey spoke candidly about how they use technology to connect with the greater CF community, how they manage their disease and their hope for the future.

The conference ended on an energetic high note when a local high school marching band kicked off the Foundation's largest national fundraising event, Great Strides, with a pep-rally style celebration. Conference participants were encouraged to share stories about why they stride and what inspires them to continue supporting the search for a cure.

“Thanks to the hard work, dedication and steadfast support of our loyal and passionate volunteers, there is more hope in the CF community than ever before,” Beall said. “Our volunteers know that by coming together with local communities and collaborating with others, we can end this disease.”

Register for instant access to the Volunteer Leadership Conference live stream archive, including the State of the Science presentation and adult panel discussion.

Photo of Kristin Dunn

Kristin Dunn, who led this year's Adult Panel Discussion, was presented with the Alex Award, named in honor of Frank Deford's daughter who passed away from CF at the age of 8. The award is given annually to a person with CF who is a role model to others.

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