On April 4 and 5, staff and friends from across the country came together at the Cystic Fibrosis Foundation’s 2014 Volunteer Leadership Conference (#CFVLC2014) to hear updates on CF research, share fundraising ideas and success stories, and plan for the year ahead in the fight against CF.
The recorded sessions are now available. Register below for instant access.
Friday, April 4
9:00 - 10:45 a.m.
President and CEO of the Cystic Fibrosis Foundation Robert J. Beall, Ph.D., and Chair of the Board of Trustees Cam C. McLoud kick off the conference with opening remarks and a special video message from award-winning comedian and long-time friend of the Foundation, Lewis Black.
Mary and Lou DeFalco, co-chairs, 2012-2013 Volunteer Leadership Initiative, and Katrina Young and Angie Kinney, co-chairs, 2014-2015 Volunteer Leadership Initiative, discuss the highlights of this year’s conference and the future of the Volunteer Leadership Initiative.
President and CEO of the Cystic Fibrosis Foundation Robert J. Beall, Ph.D., reflects on the accomplishments volunteers helped make possible in 2013 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, discuss the exciting, new medical and scientific developments in the search for new treatments and a cure.
11:00 a.m. - 12:15 p.m.
Strategic Planning Initiative
C. Richard Mattingly, executive vice president and chief operating officer of the Cystic Fibrosis Foundation, provides an update on the Foundation’s 2013 Strategic Planning Initiative and our priorities over the next five years.
2:00 - 3:15 p.m.
Real Talk about Real Life with CF: CF Adult Panel Discussion
This virtual panel discussion featuring four adults with CF is an open dialogue about overcoming challenges while living with a chronic disease.
3:30 - 4:30 p.m.
Fundraising Breakout Session: "Passion Fundraising" for Great Strides
Three top volunteers discuss tips and share ideas on how to turn a personal hobby or interest into a successful “passion fundraiser” for Great Strides.
Moderator: Pam Baker, national family team chair, Georgia Chapter
Saturday, April 5
8:30 - 9:15 a.m.
CF Public Policy Initiatives
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 for Policy & CF Community Affairs Mary B. Dwight presents the CF Foundation’s top public policy initiatives and the most pressing issues for 2014.
9:45 - 10:45 a.m.
Breakout Session: Getting Involved with CF Advocacy
This presentation and panel discussion featuring Amy and Peter Barry, national advocacy co-chairs, and Diane Dudek, state advocacy chair, Greater Illinois Chapter, covers ways to speak out and inspire legislative action in the fight against cystic fibrosis and why it’s important.
Moderator: Bill Elder, state advocacy chair, Colorado Chapter
12:30 - 1:00 p.m.
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