Volunteer Leadership Conference Brings Together Foundation’s Top Agents in Mission to Find a Cure

March 12, 2013

Volunteer Leadership Conference 2013

More than 400 of the Foundation’s most dedicated volunteers, staff, and corporate donors gathered in Virginia this March for the 2013 Volunteer Leadership Conference.

Donning sun glasses and dark suits, Volunteer Leadership Initiative co-chairs Mary and Lou DeFalco opened the 2013 Cystic Fibrosis Foundation Volunteer Leadership Conference in Reston, Va., last week with one, simple question: Do you accept our mission to cure CF?

The DeFalcos question was met with a rousing “yes” from the audience of 400 of the Foundation’s most committed volunteers, corporate sponsors and staff. The mission, they explained, is sure to be accomplished when a community of dedicated volunteers works together for one, common goal.

“Our vision has never been clearer or more focused, but finding a cure cannot be done without the support and generosity of our volunteers and corporate partners who fuel the fight against CF,” said Robert J. Beall, Ph.D., Foundation president and CEO. “Because of their commitment and hard work, people with this disease are living longer than ever before. I know that by working together we will find a cure for all people living with this disease.”

Recognizing Volunteer Leaders

Volunteers, chapter staff and corporate partners used the conference to network, share fundraising success stories and prepare for the year ahead. The conference also provided a venue to recognize and honor many of the Foundation’s most inspirational volunteer leaders whose work has made a lasting impact on the lives of those touched by cystic fibrosis.

Mark Horak, President of the America’s for Warner Home Video at Warner Brothers and Chair of the Los Angeles Office – Southern California Chapter, was presented with the Corporate Hero of Hope Award for the instrumental role he played in founding the “Los Angeles Entertainment Summit.” The event brought together some of Hollywood’s most well-known names — including people from Disney, Amazon, DreamWorks, GameStop, Target and Wal-Mart and last year raised $400,000.

Frank Deford, chair emeritus of the CF Foundation Board of Trustees, presented Stacy Motenko with the Alex Award via a video message. This special honor, named in memory of Deford’s daughter Alexandra who passed away from CF in 1980, is presented each year to a person with CF who is a role model to others with the disease.

Stacy has volunteered for the CF Foundation since the age of four and has given the Bid for a Cure speech at the Orange County Office – Southern California Chapter’s "Guild Gala" for the last 11 years. “Stacy Motenko exemplifies Alex’s values and courage. She represents the community with her success story and the way she connects to people,” Deford said. “She is strong, successful and has a special way of bringing people together with her positive attitude.”

Stacy Motenko was honored with the Alex Award at the 2013 Volunteer Leadership Conference.

Stacy Motenko was honored with the Alex Award for ability to bring the community together with a positive attitude and fighting spirit at the 2013 VLC Conference.

After Stacy graciously thanked her family, the CF Foundation and its dedicated volunteers in a moving speech, longtime friend and devoted volunteer Victoria Shaw took to the stage. The Grammy-award winning singer/songwriter performed a few country hits, and ended the show with “One Heart at a Time,” a song she wrote to benefit the CF Foundation in 1998.

Each year, longtime volunteer leaders Marc and Margarete Cassalina present the Jena Award, named in honor of their daughter who passed away from CF at age 13, to someone who has not been directly touched by the disease, yet works tirelessly on behalf of the CF Foundation’s mission.

This year’s winners, Amos Beason and John Barlow, received the honor for their passion, perseverance and dedication to the CF cause. The two avid hikers are known as the “founding fathers” of the CF Foundation’s Xtreme Hike. In 2009, Amos and John raised $47,000 for the Foundation when they decided to push themselves, hiking 30 miles in one day. Since 2009, the Hike program has raised more than $1.25 million and challenged more than 300 hikers. John and Amos have remained at the forefront of the project, leading both novice and experienced hikers on a journey to change their lives and the lives of thousands more, both on and off the trail.

“Seeing just how far we’ve come gives me hope for the future. The progress we’ve made is real and tangible, and it sets a solid foundation we can all build from,” Mary DeFalco said. “Part of what makes our mission possible are all of the dedicated volunteers, corporate donors, and Foundation staff who have committed their time and talents to ending this terrible disease.”

This year, for the first time, the opening plenary and awards ceremony segments of the conference were live streamed for those who were unable to attend. Watch the live stream segments here.

Celebrating a Year of Success 

The Foundation also recognized other corporate partners, volunteers and staff for their outstanding support over the past year.

Corporate honorees included:

National Corporate Great Strides Team

  • CHUBB – led by Jim Darling

Outstanding Corporate Partner Award

  • American Airlines

Spirit of American Award

  • Michael P. Balkin

Corporate Leadership Council Members

  • AbbVie
  • Aptalis
  • Genentech
  • Gilead Sciences
  • Novartis
  • Wells Fargo
  • CVS/Pharmacy

CF Foundation chapter honorees included:

$1 Million Chapters

  • Carolinas Chapter – Raleigh Office
  • Louisiana Chapter – Baton Rouge Office
  • Virginia Chapter

$2 Million Chapters

  • Delaware Valley Chapter
  • Southern California – Los Angeles Office

$3 Million Chapter

  • Texas Gulf Coast Chapter

$5 Million Chapter

  • Metropolitan, Washington, D.C. Chapter

$10 Million Chapter

  • Greater New York Chapter

Best New Cycle for Life Event

  • Carolinas Chapter – Charlotte Office

Highest Net for Xtreme Hike

  • Carolinas Chapter – Charlotte Office

Best New Xtreme Hike Event

  • Massachusetts/Rhode Island Chapter

Highest Dollar Growth in Great Strides

  • Greater Illinois Chapter – large market
  • Carolinas Chapter – Raleigh Office – medium market
  • Northern New England Chapter – small market

Largest Major Gifts Programs

  • Greater New York Chapter – large market
  • Connecticut Chapter – medium market
  • Tucson Chapter – small market

Highest Dollar Growth in Annual Fund Gifts

  • Greater Illinois Chapter – large market
  • Indiana Chapter – medium market
  • Arkansas Chapter – small market

Highest Overall Percentage of Growth

  • Texas Gulf Coast Chapter – large market
  • Louisiana Chapter – New Orleans Office – medium market
  • Central Texas Chapter – small market

Watch the slideshow below to see more photos of the 2013 Volunteer Leadership Conference.