The Crowd: Writing the book on cystic fibrosis

As some 425 guests arrived at the Newport Beach Marriott Hotel and Spa, they entered the ballroom to find a handsome gold-covered and perfectly bound book at each table place setting.

The thickness of the publication suggested far more than a brochure and slightly less than a local phone directory. Opening the book, published on the occasion of the 31st annual gala in support of the Cystic Fibrosis Guild of Orange County, the reader was immediately brought to tears. Every other left-hand page in the publication featured a full portrait of a young person fighting cystic fibrosis. Pages and pages of brave souls struggling for breath.

The enormous tribute book as well as the gala was dedicated to the memory of Sarah Joanne Kanofsky, who lost her life at age 12 in 1997. Sarah is quoted in the book on one of the tribute pages asking, "Is there ever a time that cystic fibrosis will not be with me?" Sadly, that time was not to come for Sarah.

Her family, including mother Carol, father Myron, sister Megan, grandparents Pat and Martin Brody and many other caring relatives and friends have dedicated their lives in Sarah's memory to help find a cure for cystic fibrosis in their lifetime.

The 2014 cystic fibrosis gala raised an impressive $603,000, which will be donated for research into the disease and for care in the Orange County community. Chaired by super-dedicated cystic fibrosis donors Dan and Gayle Demsher, the evening featured an emotional highlight: 27-year-old Stacy Motenko spoke to the patrons about her struggle living with cystic fibrosis.

Motenko has graced the cystic fibrosis gala in the past, and her success and extended life offer a beacon of hope to many who had come to the event because their own children are also fighting the fatal hereditary condition, which shuts down the lungs and digestive system.

Researchers have made significant progress in recent decades. The lifespan of those afflicted has been significantly extended as a result. Not long ago, a child diagnosed with cystic fibrosis was not expected to survive past the early teen years. Despite the progress, there is no cure.

The seriousness of the affliction, and the fact that it affects children and young people, makes this particular Newport Beach social event a gathering of serious intention. The 400-plus guests do not come to impress their friends or to show off the latest fashions. They come to demonstrate solidarity and to inspire the children suffering and the families persevering never to give up hope.

Perhaps more importantly, the message of the night, which was also a theme throughout the big gold-bound book, is the idea that people must cherish every moment.

Every year, the Cystic Fibrosis Guild honors an individual or family with its prestigious "Breath of Life" Award. The 2014 honors were presented to the Stremick family. Family members in attendance included Lou and Nancy Stremick, Sam and Julie Stremick, Nick and Gianna Stremick, Russ and Megan Helgeson and Dan and Katie Horwich. Participating in the honors were guild President Sue Hook and her husband, Dave, and donors including Dan and Danni Good, Mike and Mary Zollman, Joe and Karen Perricone, Lula Halfacre and Pierre Andre, Pamela Paul and Jack Cancellieri, John Puccio, Diane Stovall, and Jeff and Kaelyn Reed.

The evening at the Marriott began with a sunset cocktail and hors d'oeuvres reception and silent auction. A four-course dinner was served at 7:30 in the dining room, beginning with a popular wedge salad followed by an entrée of pan-seared sea bass or grilled filed mignon. Dinner was punctuated by a live auction, which featured fine dining excursions, golf, ski and Caribbean travel packages and premiere wines.

The evening's honorees, Lou and Nancy Stremick, pledged to match the first $100,000 in bids. The crowd raised $138,700, and so, with the Stremick generosity, $238,700 was raised in the live auction. Longtime sponsor American Airlines helped to make the evening a success. It was joined by additional sponsors BJ's Restaurants Inc., Traditional Jewelers, Lithocraft, ViewSonic, Watson Land Co., Helene Galen, Ron and Dianne Higgins, Ken and Debbie Johnson, Todd and Sue Klug and Tom and Penny Ling, to name only a few.

Over the past 30 years, the Cystic Fibrosis Guild has netted more than $10.3 million to find a cure. To learn more, please call (714) 938-1393.

THE CROWD runs Fridays. B.W. Cook is editor of the Bay Window, the official publication of the Balboa Bay Club in Newport Beach.

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