CF Foundation Recognizes Three CF Community Leaders at the 2017 Volunteer Leadership Conference

On April 7, the Foundation presented the AlexJena, and Dream Big Awards to leaders in the cystic fibrosis community for their dedication to the Foundation's mission of finding a cure.

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The Dream Big Award

In Dallas, Texas, more than 600 Foundation volunteers and community members looked on as one of the CF community's biggest leaders and chair emeritus of the Board of Trustees, Frank Deford, was presented with the Dream Big Award, which recognizes someone who has made a monumental difference in the fight against CF. Frank's involvement with the Foundation began after the heartbreaking loss of his daughter, Alexandra, to cystic fibrosis in 1980 at the age of eight. For more than three decades, Frank has dreamed big in ways that no one could have imagined and has given so much of his life, passion, and unique talents to the CF community.

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Archive photo of Frank Deford.

As a volunteer and later as the chair of the board for 16 years, Frank helped guide the Foundation to become the success story it is today. Frank's book, “Alex: The Life of a Child,” in which he detailed the brave battle he, his wife, Carol, his son Christian, and his daughter Alex waged against CF -- has inspired millions of readers around the globe. In Frank's own words, “Alex gave CF a face.”

The Jena Award

Margarete and Marc Cassalina took the stage to present the 2017 Jena Award, named for their daughter Jena, who lived courageously with CF until the age of 13. As one of Jena's favorite country songs played, Margarete blew her daughter a kiss and spoke about why she and her husband give this award every year: to honor Jena and acknowledge the contributions of a special person without a personal connection to CF who has shown steadfast dedication to the fight against the disease.

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Margarete and Marc Cassalina presented the 2017 Jena Award to Bob Emmelkamp. (From left to right, Margarete Cassalina, Bob Emmelkamp, and Marc Cassalina)

This year's Jena Award went to Bob Emmelkamp. Bob started raising money for CF in 1976 when he was in high school. With no direct personal connection, he fell in love with the Foundation's mission and was inspired by the families that he met. Now, 40 years later, Bob raises tens of thousands of dollars annually by speaking about what cystic fibrosis is and how the Foundation is working to pursue a cure by pioneering innovative new therapies. Bob has served as the chair of the Arizona chapter board and he has presided over the CF Climb and Firefighter Challenge committees.

The Alex Award

The final award of the evening, the Alex Award, was presented to Linda Bowman by Frank Deford, chair emeritus of the CF Foundation Board of Trustees. The award is in honor of Frank's daughter, Alex, who passed away from CF at the age of 8. Frank called Linda “effervescent and inspirational” in a video in which he talked about Linda's many contributions in the fight against CF, as well as her love for dancing.

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Linda Bowman accepted the Alex Award, a painting by CF community member Somer Love.

He shared that Linda celebrated her 40th birthday by performing in a musical, “42nd Street.” Linda, who candidly opened up about her life with CF as part of the “Our CF Story” panel, began volunteering for the Foundation at the age of 18 and is now the adult liaison to the CF care centers in Broward County and Boca Raton, Florida. She is a dedicated, impassioned speaker, spreading the Foundation's message and served on the CF Adult Advisory Council (AAC). She was also part of the BreatheCon work group, which planned the first virtual event for adults with CF. Linda is an inspiration to all people living with cystic fibrosis.

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