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2015 Volunteer Leadership Conference


On March 20-21, 2015 staff and friends from across the country will come together at the Cystic Fibrosis Foundation’s 2015 Volunteer Leadership Conference (#CFVLC2015) to learn the latest news about medical advancements, enhance the ways in which we serve the CF community and take away key ideas that will help enhance fundraising efforts.

This year’s theme is “Community and Collaboration” — together we can end this disease and help all people with CF embrace a big and bright future. Together we will gain the power and energy to move forward toward our ultimate goal — a one-time lifetime cure for all people with cystic fibrosis. As a community we must also help people with the disease live longer, healthier lives today.

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Friday, March 20

10 a.m. - noon EDT

Conference Overview

Katrina Young and Angie Kinney, co-chairs, 2014-2015 Volunteer Leadership Conference, will discuss the importance of collaborating within your community to help us reach our ultimate goal. 


President and CEO of the Cystic Fibrosis Foundation Robert J. Beall, Ph.D. will kick off the conference with opening remarks.

Foundation Update

President and CEO Robert J. Beall, Ph.D., reflects on the accomplishments volunteers have helped make possible in 2014 and discusses the Foundation’s goals for the coming year.

State of the Science

Robert J. Beall, Ph.D., president and CEO and Preston W. Campbell III, M.D., executive vice president for medical affairs of the CF Foundation, along with Michael Boyle, M.D., director of the Adult Cystic Fibrosis Program at Johns Hopkins Cystic Fibrosis Center, and William R. Skach, M.D., vice president of research affairs of the CF Foundation, will discuss the exciting new medical and scientific developments in the search for new treatments and a cure.

Leadership Council Recognition

Sue Hook, national trustee, will recognize this year’s members of the Leadership Council.

12:30 - 1:45 p.m.


Amy DeMaria, senior vice president of communications, will share a sneak preview of the CFF’s new digital presence to be unveiled later this year.

Social Media

John Foley Jr., CEO/CMO of interlinkONE & Grow Socially, will speak about how to build community and collaboration through innovation and interactivity in the increasingly pervasive online world.

2:00 - 2:30 p.m.


Federal and state governments play a vital role in CF research, drug development and the ability of people with CF to access care centers and therapies. Senior Vice President of Patient and Community Affairs Mary B. Dwight presents the CF Foundation’s top public policy initiatives and the most pressing issues for 2015.

3:00 - 4:15 p.m.

CF Adult Panel Discussion

Kristin Dunn will moderate a virtual panel discussion with Andy Lipman and Somer Love to examine “Listening, advocating, and helping – life with CF in a supportive community.”

7 - 9 p.m.

Awards Dinner

Awards will be presented to corporate supporters and leading chapters. The 2014 Jena Award, established by Marc and Margarete Cassalina in honor of their daughter Jena, will be presented to a special person who is not directly touched by cystic fibrosis, but who nevertheless works vigorously on behalf of the Foundation’s mission to find a cure. The 2014 Alex Award, established by Frank Deford, chair emeritus of the CF Foundation Board of Trustees, in honor of his daughter Alex, annually recognizes someone with CF whose life is an inspiration to others.

Saturday, March 21

8:30 - 9:30 a.m.

Patient Engagement and Care Centers

Bruce Marshall, M.D., senior vice president of clinical affairs, and Cindy George, M.S.N., F.N.P., senior director of patient engagement, will discuss the CF Foundation’s strategy dedicated to the discovery of tools and programs to empower individuals with CF and their families in the successful management of their health.

9:10 - 9:30 a.m.

Patient Assistance Resource Center

Azi Kaider, Manager of the Access to Care Programs, will discuss the patient assistance services offered by the CF Foundation to support people with CF as they manage the physical and emotional stresses of living with CF, while also navigating complex and time-consuming insurance and coverage issues.

10 - 10:15 a.m.

Qualitative Research on CFF Volunteer Program

Presented by Sarah Rodgers, Vice President and Senior Research Analyst at Edge Research.

10:15 - 11:15 a.m.

Volunteer Engagement

National Director of Volunteer and Donor Relations, Molly Riley will moderate a panel discussion with seven active volunteers focused on the three R’s of volunteer engagement; recruitment, retention and recognition. The panel will focus on key areas, including how to reach out to and keep new volunteers/young professionals, how to build relationships with corporate supporters and how to maintain motivation among long time volunteers.

Noon - 1:30 p.m.

Great Strides Kick-Off Lunch

Great Strides goals and initiatives for 2015 will be reviewed during this exciting kick-off lunch, and awards will be presented to leading chapters. Katrina Young and Angie Kinney, co-chairs, will conclude the conference with key calls to action.

We thank our event sponsors:

Genentech Vertex_VLC
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The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.