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Joining me at Cystic Fibrosis of Orange County's  31st Annual Cystic Fibrosis Gala were Guild President Sue Hook and CF patient, advocate and gala speaker Stacy Motenko

Joining me at Cystic Fibrosis Guild of Orange County’s 31st Annual Cystic Fibrosis Gala were Guild President Sue Hook and CF patient, advocate and gala speaker Stacy Motenko

I am always touched to the bone by Stacy Motenko. She has spoken of her life with cystic fibrosis for each of the last 14 Cystic Fibrosis Galas. Stacy is now 27 years old, and knows the clock is ticking. The fatal disease affects the lungs and digestive system and because of malfunctions in the sodium chloride channels, thick mucus is produced. The lungs become encompassed, and it makes breathing nearly impossible. Children and adults with CF spend two hours a day hooked up to a machine that vibrates to help loosen the mucous and get rid of it in the lungs. In addition, they take 40 pills a day to keep them alive.

“I was not expected to live long enough to graduate from high school,” Stacy told the 425 guests at this year’s 31st Annual Cystic Fibrosis Gala, held at the Newport Beach Marriott Hotel & Spa in late May. She has shared with us over the years her struggles with multitudes of iv therapies to boost her immune system, being hospitalized for weeks at a time – many times over the years – with major intestinal blockages, having sinus surgery with six weeks of complications following it, to name a few. With that being said, this brave young girl graduated from high school and college (with honors) and started her career working at the Cystic Fibrosis Foundation in San Diego. Currently, Stacy is working as a CF advocate at Modern HEALTH Specialty Pharmacy, “so that I can help other CF families navigate this difficult disease,” she said.

Stacy thanked everyone for their love and support over the years. “I learned, while telling my story, that I could conquer challenges and live a meaningful and fulfilling life despite my disease,” she said. “And, I learned, through your example, how important and rewarding it is to help others.”

The other person who always impresses me at the CF Gala is Sue Hook, who began fighting the CF battle for a little boy in her neighborhood when she was in high school. She is a founding member of the the Cystic Fibrosis Guild of Orange County, formed in1982, Guild President for 20 years and running and a trustee of the National CF Foundation for more than 15 years. She doesn’t have children herself, but she knows lots of kids with CF, and she fights for them every day.

Hook presented the guild’s “Breath of Life” award to the Stremick family – parents Nancy & Lou Stremick, and their children and spouses Katie & Dan Horwich, Gianna & Nick Stremick, Julie & Sam Stremick, and Megan & Russ Helgeson. The entire family has raised money to fight CF ever since Katie & Dan’s daughter Ella was diagnosed at 15 months. She is now eight years old. Emma’s uncle and godfather Uncle Nick formed “Team Ella” by running the OC Marathon and raising more than $100,000. The ladies are all guild members, with Katie and Julie chairing the gala’s auction four years running, and the men are constantly making connections for CF. “Collectively, you are dynamic…individually you are each exceptional!” Sue said, as she presented each couple with a pair of Tiffany champagne flutes.

Welcoming everyone were gala co-chairs Gayle & Dan Demsher, another impressive couple, who have chaired the gala six years running and have a 14-year-old son, Connor with CF. Gayle pointed out that when the gala began 31 years ago, the life expectancy of a child born with CF was kindergarten. “Today, the life expectancy has increased to almost 37 years old,” she said, and, speaking of the latest strides in science, she shared, “We have the science that leads to managing this disease, and we are so close!” Dan thanked the generous sponsors – the top donors were American Airlines and BJ’s Restaurants, Inc. – and shared that the Orange County chapter continues to be in the forefront of raising money and awareness for CF, “raising more than $3.6 million this alone,” he said. Wow!

Feisty auctioneer Dawn Marie Kotsonis entreated guests to bid on trips to NYC, Hawaii, Nashville, and France, tickets and accommodations to the Notre Dame/Stanford football classic in South Bend, The Voice tickets, an autographed Kate Perry guitar, and weekend use of a Ferrari from Ferrari & Maserati of Newport Beach and two-night stay at the Island Hotel in Newport Beach. The Stremick family offered to match the first $100,000 raised in the Bid for a Cure auction segment, and it was matched and more, raising $239,650 for the cause. Traditional Jewelers in Newport Beach donated a handsome Baume & Mercier men’s watch valued at $4,700, which was won by CF parent and supporter Steve Caro. The really good news? More than $624,000 was raised in net proceeds for CF research and care. The Droppers band packed the dance floor – this is a dancin’ crowd! – and guests let loose with all the built up tension an event like this can bring. One last mention – Walter Urie’s black and white photographs of the CF children and adults shown around the ballroom and in the program book were just beautiful and reminded all of us of the importance of much better treatment and a cure.

The Really Good News: Since the gala, Vertex Pharmaceuticals announced it is going for FDA approval for a drug that will treat CF’s basic genetic defect in 50% of patients. That is phenomenal news!!

Photos by Ashley Swensen and Leana Rakjian

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