Two years ago, I spent a night at the Grand Chef Throwdown at the Hotel Del. Few nights entertain the hell out of you, and shake you, like this one. Over 30 chefs, and seemingly every icon of the San Diego food scene, assembled on the grand lawn. I didn’t know much about cystic fibrosis at the time, which is the point.
I met people who’d been given brutally short life expectancies, and could count the years they’d outlived the bleak numbers. Most of us don’t have to think about our breath. With CF, someone explained, each breath can be like trying to get enough air through a straw.
"When I was born, my parents were told I wouldn’t live to be much past 12," says Lauren Jones, a CF patient and chair of this year’s event. "Now I’m 44, and I have my own child, and I kind of have just taken these life-shortening prognoses as more of a suggestion and not a rule."
CF is a genetic disease that affects the lungs and other organs (it’s far more complicated than that, but that’s how you fit a phone book in one sentence). It used to be terminal, at a very young age. The disease took people’s children. Now, thanks to work by the Cystic Fibrosis Foundation (started in 1955 by parents of those kids), many patients are living long enough to go to college, have kids, age into their 40s. Food from chefs like those cooking at the Throwdown—including culinary chair Flor Franco (Indulge Catering), Stephane Voltzwinkler (Mister A’s), Phil Esteban (Craft & Commerce), JoJo Ruiz (Serea), Adrian Mendoza (Herb & Wood), Jorge Gonzalez (Buona Forchetta), and dozens more—plays a huge part.
"CF patients need a high-calorie, high-fat diet because we can’t digest our foods," explains Jones. "We require one and a half to two times the amount of calories that a non-CF person does. I struggled to gain weight a lot when I was younger, and I spent a lot of time in the hospital. In sixth grade, I started doing two feedings at night to get the extra calories. I attribute my good health today to that."
About 30,000 patients suffer from CF in the U.S., and 70,000 globally. That number is a problem. Because, while not small on a human scale, it's also not large enough. Put simply, lesser known diseases get lesser funding. Nights like Grand Chef Throwdown attempt to fill the funding gaps.
"I fell in love with the families," says Franco, who every year rallies her chef friends for the Throwdown. "They’re on their own. This is not like cancer and diabetes where they get a lot of money and government help. The families are alone, so that’s why I help."
"For a long time CF was a childhood disease," Jones explains. "Now there are a lot more patients living into adulthood. So there’s more awareness, and the CF Foundation and donors have made progress in developing drugs to help improve people’s quality of life."
The average lifespan for a CF patient is 37.5 years. Jones has outlived that by seven.
"I think it’s a curable disease, hopefully in the near future," she says.
The Grand Chef Throwdown will be held at the Hotel Del Coronado on Sept. 13. Tickets are available here.