I have admired my friend Sue Hook’s commitment to the cure of cystic fibrosis for years. Having no children with the deadly disease, she as been passionate about raising funds for the nonprofit since her high school years when she and a group of students formed a club to help a little neighborhood boy with CF. She went on to be a founding member of the Cystic Fibrosis Guild in Orange County, chaired its annual gala 21 years and has been guild president for many years. At this year’s 29th effort at the Newport Beach Marriott Hotel, I saw an ecstatic Hook telling the 489 guests that with FDA approval of VX770, known as Kalydeco, for the first time treating the basic defect of the disease was possible. Smiles and tears were prevalent.
The gala is always a heartwarming affair, with just walking into the ballroom and seeing photos of local kids with cystic fibrosis bringing the message home. Along with Hook, others speaking included Gayle and Dan Demsher, gala chairs for four consecutive years and whose 12-year-old son Connor has CF, 25-year-old Stacy Motenko, who spoke once again about her difficult life battling CF while remaining upbeat for a cure, and KKGO country radio personality Shawn Parr, MC and auctioneer, who revved up the bidding in the live auction in his red shoes, which he auctioned off to Bob Zieman for $1,300 along with country dance lessons for 20. Zieman (who did give Parr his red shoes back!), was honored with the gala’s “Breath of Life” award along with his wife Helen, Susana Huston, and Beth and Bob Huston for their tireless efforts in raising funds and awareness for cystic fibrosis. Dancing to the popular Sound Bytes band closed out the affair, which, with auction items selling two and three times, saw net proceeds of $552,000 for CF research.
Photos by Daniel Kintz and Benedick David