CF Foundation Honors Community Leaders at 2016 Volunteer Leadership Conference

Daniela Semedo, PhD avatar

by Daniela Semedo, PhD |

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CF foundation's Jena Award

From left, Jim and Rosemary O’Neill receiving the Jena Award from Margarete and Marc Cassalina. (Photo courtesy of CF Foundation)

Over 500 members and volunteers of the Cystic Fibrosis Foundation were present at the recent 2016 Volunteer Leadership Conference, a two-day event honoring those whose efforts have made a difference in the lives of people with cystic fibrosis.

Joe O’Donnell was the recipient of the Dream Big Award, in recognition of his contributions to advancing the Foundation’s mission of curing cystic fibrosis (CF), and providing all people with the disease the opportunity to lead full, productive lives.

O’Donnell was distinguished as a remarkable fundraiser and volunteer in the fight against CF. In the 1980s, he and his wife, Kathy, became involved with the CF Foundation and began The Joey Fund to honor their son, Joey, who had CF.

For the last three decades, O’Donnell has been actively involved in encouraging philanthropic giving. He serves as the chair of the Milestones to a Cure and Milestones II: Accelerating the Search for a Cure, two of the CF Foundation’s most successful campaigns, raising raise hundreds of millions of dollars in support of Foundation causes. He has also hosted many events, including the annual Joey O’Donnell Film Premier and the Hot Dog Safari.

The Jena Award went to Rosemary and Jim O’Neill for their dedication as 20-year Foundation volunteers. The award was named to honor Jena Cassalina, who died from CF at age 13. The O’Neills, who began their journey by walking at a Great Strides event to support their neighbors, have raised over $1 million in philanthropic support. They have been committee chairs, party hosts, title sponsors, and major donors for the Western Pennsylvania Chapter‘s fundraising event, A Passion for Wine.

“The dedication that Rosemary and Jim have toward the Cystic Fibrosis Foundation and my family comes from their hearts,” Janet Brendel, the O’Neill’s neighbor whose two children have CF, said in a press release. “The Western Pennsylvania Chapter and my own family have greatly benefited from the O’Neill’s generous spirits and feel they are well deserving of the 2016 Jena Award.”

Andy Lipman received the Alex Award, given to an individual with CF who is a role model in the community. The award  was presented by the chair emeritus of the CF Foundation Board of Trustees, Frank Deford, and honors his daughter, Alex, who died from CF at the age of 8.

“He is an absolute dynamo and a model whom anyone with CF can look up to,” Deford said of Lipman in a video presentation of the award.

Lipman serves as member of the Foundation’s Adult Advisory Council (AAC), and is the chair of A Wish for Wendy’s Softball Challenge, an event supporting the CF Foundation’s Georgia Chapter that is now its 16th year and has raised more than $2.7 million.

“There are 69,999 other people that have this disease worldwide and I want to help them, I want to show them we can live a longer life,” Lipman said.

CF is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe. In CF, a defective gene causes a thick buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus can clog the airways and trap bacteria, leading to infections, extensive lung damage, and, eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.

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