cystic fibrosis, Cystic Fibrosis Foundation's Southern California Chapter, Cystic Fibrosis Guild's 30th anniversary gala, FDA approved drugs for cystic fibrosis, Gayle and Dan Demsher, Kalydeco, Ken and Debbie Johnson, National CF Foundation, Shawn Parr, Sound Bytes band, Stacy Motenko, Sue Hook, Walter Urie
I have been attending the Cystic Fibrosis Guild’s Annual Gala for at least two-thirds of its 30 years, and I never cease to be touched by the many involved who are so passionate about finding treatment and a cure for the dreaded disease. Sue Hook, who chaired the gala for many years and now serves as Guild President as well as a national trustee of the CF Foundation, shared at this year’s gala, “I recently returned from a board meeting in Bethesda, and I can tell you there is continued excitement in the air about Kalydeco, the drug that affects the basic defect of this disease.” Continuing, she said, “This drug will essentially be a cure for about 50% of those children and young adults living with CF. What great news!” Hook concluded. Her hope, she said, was for the foundation to continue to step up its efforts to raise the much needed dollars for research so that the cure can affect 95% of all children and adults in 15 years.
I must tell you, the gala, which drew 375 guests to the Newport Beach Marriott Hotel & Spa, was afire for raising money, netting $623,000 for research – $53,000 more than last year. And how about this figure? The Guild had contributed more than $9.775 million to the cause prior to the gala!
You can’t help but be optimistic for finding a cure when you see Walter Urie’s loving enlarged photos of the children and young adults with CF scattered in the reception entry and around the expansive ballroom. Returning gala chairs Gayle and Dan Demsher, whose 13-year-old son Connor suffers with CF, spoke passionately about their commitment to the cause and thanked the many gala sponsors, while Shawn Parr, country music personality from Go Country 105, once again charmed everyone (he has been serving as gala MC and auctioneer for nearly 20 years!).
Hook presented the gala’s Breath of Life honor to Ken and Debbie Johnson, who have been involved with the guild for 15 years. “It is clear the Johnsons are more comfortable giving than receiving,” Hook said, presenting the generous couple with a crystal Tiffany bowl filled with Hersey kisses and a book filled with photos and letters from the many with CF that they support. “We’re here for as long as you need us,” Debbie said, clearly touched by the honor. Twenty-six-year-old Stacy Motenko continued her story of living with CF, as she has done at the gala for 13 years, and relayed that it has been a year of, as she put it, “wonderful beginnings, among them, a new job, a new home with wonderful roommates, a loving boyfriend, and a lifelong dream come true – meeting my idol Celine Dion.” Even though the clinical trial that Stacy had been involved with for seven years did not show a positive impact and wouldn’t be submitted to the FDA for approval, she overcame their devastation, she said, by realizing that so many were committed to continuing the fight and how grateful she was for that.
The silent auction, which by the way, is the biggest I have seen at charity events, was held during the gala reception, and the live auction later in the evening was jam-packed with items like trip to New York, skiing in France, a five-day stay in your choice of one of the luxury hotels of the world, a trip to Notre Dame/USC football in South Bend, and a three-night stay at the Ritz-Carlton of your choice and 130,000 American Airlines AAdvantage miles (AA is a major CF Gala supporter). Ferrari & Maserati of Newport Beach offered a two-day use of their cars for three couples, which included a two-night three-bedroom villa getaway at Pelican Hill Resorts. Season 17 tickets to Dancing with the Stars drew some active bidding, and committee member Danni Good was ecstatic to win the raffle prize – two tickets to Season 13 of American Idol, donated by Matt and Teri Rogers.
Not missing a beat following the auction, the Sound Bytes band revved up the action with some great Rock ‘n’ Roll music that packed the dance floor in a matter of seconds. It was that kind of night!
Photos courtesy of Leanna Flecky and Richard Eldridge