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Foundation’s Top Volunteers, Friends Gather to Share Exciting Fundraising Ideas at 2014 Volunteer Leadership Conference

April 14, 2014

Marissa Benchea

Marissa Benchea was honored with this year’s Alex Award. The award is presented by Frank Deford, chair emeritus of the CF Foundation board of trustees, and is named in memory of his daughter, who lost her battle with CF in 1980 at the age of 8. The award recognizes someone with CF who lives courageously and acts as a role models to others with the disease.

United by their determination to find a cure for all people with CF, approximately 400 volunteers, chapter staff and corporate donors gathered at the Cystic Fibrosis Foundation’s annual Volunteer Leadership Conference in Bethesda, Md., held April 4 and 5.

Audience members were joined by nearly 400 online participants who watched the conference via live stream. In an effort to include more people with cystic fibrosis, the Foundation made the bulk of the conference programming available online for the first time in the conference’s 11 year history.

The conference’s theme — The Time is Now — highlights the Foundation’s opportunity to advance its mission following recent breakthroughs in drug discovery to accelerate the search for new treatments and a cure.

“Thanks to the hard work, commitment and determination of our loyal and passionate volunteers, we have never been closer to fulfilling our mission than we are today,” said Robert J. Beall, Ph.D., CF Foundation president and CEO. “It is vital that we accelerate our efforts so that we are best positioned to pursue every possible opportunity that may lead to a cure for all people with this disease. There is no better time to do that than right now.”

Volunteers, chapter staff and corporate partners used the conference to network, share fundraising success stories and fresh strategies to help fuel the Foundation’s mission. During the opening plenary, VLC co-chairs Mary and Lou DeFalco passed the leadership torch onto new co-chairs, Angie Kinney, of the Western Pennsylvania Chapter, and Katrina Young, of the San Diego Chapter.

Lasting Impact

Baltimore Ravens quarterback Joe Flacco, a strong supporter of the Foundation’s mission, brought his star power to the conference, and spent time talking with and thanking volunteers and donors for the role they play in helping to support the search for a cure.

Country music duo Steve Branch and Dean Scallan, known as Branch & Dean, entertained conference participants at the evening’s awards dinner with their new song, “The Dash.” The song is a moving tribute to Theron Steven William Branch, Branch’s only son, who lost his battle with CF in 2013. “The Dash” refers to the journey of one’s lifetime and asks listeners, “From your first breath to your last, how will you spend your dash?”

Many of the Foundation’s most inspirational individual and corporate volunteer leaders were also recognized for the lasting impact their work has made on the lives of those touched by cystic fibrosis.

Pharmaceutical company AbbVie was presented with the Spirit of American for its long-time commitment to the search for a cure and CF families everywhere.

Frank Deford, chair emeritus of the CF Foundation board of trustees, presented Marissa Benchea 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.

Mike Hart is a dedicated volunteer with the Gateway Chapter, and the recipient of this year’s Jena Award. Presented by Marc and Margarete Cassalina, the award recognizes someone who has no direct connection to CF, yet works tirelessly on behalf of the Foundation’s mission. The award is named in honor of the Cassalina’s daughter who passed away from CF at the age of 13.

Marissa has been a long-time supporter of the Cystic Fibrosis Foundation’s Tennessee chapter, and her involvement covers multiple aspects of the Foundation’s work to find a cure for CF. She has served as board president and advocacy co-chair of the Tennessee chapter and is currently a member of the CF Adult Advisory Council.

The Jena Award is presented annually to to someone who has not been directly touched by the disease, yet works tirelessly on behalf of the CF Foundation’s mission. The award is named in honor of the daughter of Marc and Margarete Cassalina who passed away from CF at age 13.

This year’s winner, Mike Hart, is a dedicated volunteer who began working with the Gateway Chapter several years ago and has served on the board, the Great Strides St. Louis committee, the FestivAle committee and, most recently, the Gala committee. In 2013 alone, he served as co-chair of Great Strides St. Louis, played a prominent role in the gala and served as board president — leading the chapter to unprecedented growth.

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:

Outstanding Corporate Partner Award

  • American Airlines

National Corporate Top Great Strides Team

  • CHUBB & Son

Corporate Rising Star Award, Great Strides

  • Bank of America, Merrill Lynch

Corporate Champion Award

  • Sue Klug, Senior Vice President and Chief Marketing Officer, Unified Grocers

Corporate Leadership Council Members

  • AbbVie
  • Aptalis
  • BB&T
  • BJ’s Restaurants
  • Genentech
  • Gilead Sciences
  • Novartis
  • Wells Fargo
  • Walgreens
  • Vertex Pharmaceuticals

CF Foundation chapter honorees included:

Best New Cycle for Life Event

  • Greater New York Chapter – Long Island Office

Highest Dollar Growth for Xtreme HikeEvent

  • Gateway Chapter

Highest Net for Xtreme Hike Event

  • Massachusetts/Rhode Island Chapter

Highest Dollar Growth in Great Strides

  • Georgia Chapter – major market
  • Gateway Chapter – large market
  • Carolinas Chapter – Charlotte Office – medium market
  • South Carolina Chapter – small market

Largest Major Gifts Programs

  • Greater New York Chapter – major market
  • Maryland Chapter – large market
  • Tennessee Chapter – Nashville Office – medium market
  • Tucson Chapter – small market

Highest Dollar Growth in Annual Fund Gifts

  • Massachusetts/Rhode Island Chapter – major market
  • Colorado Chapter – large market
  • Nebraska Chapter – medium market
  • Tennessee Chapter – Memphis Office – small market

Highest Overall Percentage of Growth

  • Arizona Chapter – Phoenix Office – major market
  • Florida Chapter – Southwest Florida Office – large market
  • Alabama Chapter – medium market
  • Arizona Chapter – Tucson Office – small market
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The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.