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Local chef works against ticking clock of rare disease

Posted: 6:00 PM, Mar 15, 2019
Updated: 2019-03-16 03:44:27Z
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In the kitchen, time is an ingredient in short supply.

Chef Dan Jacobs has found himself up against the clock in a way he never imagined.

He is battling a debilitating disease that could steal his ability to cook at any time.

"I want to expand while I can," Jacobs said. "As many things we can do, I want to while I can physically do it."

Jacobs is one of the chefs behind a growing empire of Milwaukee restaurants.

His new place is the Third Ward's funky French joint Fauntleroy.

Jacobs opened it while battling Kennedy's disease, a rare, progressive neuromuscular disorder that is wasting away his muscles.

It especially affects the muscles in his arms and legs.

"If I start getting real tired, I start dragging my feet. I'll trip. I'll fall," he said. "All it takes is that one time you fall the wrong way and that's when you really hurt yourself."

Despite that, Jacobs is still in the kitchen two or three days a week.

This year, he and business partner Dan Van Rite were nominated for their second James Beard Award in the last two years.

Since his diagnosis three years ago, Jacobs has changed his diet and added exercise. That, and a lot of help from his co-workers and wife, pushes him through the bad days.

"If I start getting real tired, I start dragging my feet. I'll trip. I'll fall," he said. "All it takes is that one time you fall the wrong way and that's when you really hurt yourself." — chef Dan Jacobs

"That has kind of helped me whether it's placebo or not, extend my ability to do things longer," Jacobs said.

He also finds strength in bringing attention to this strange disease.

On Monday, Jacobs hosts his annual Dim Sum Give Some benefit, a dinner with other Milwaukee chefs to fund Kennedy's disease research.

One of his hopes is doctors will learn more about what Kennedy's is doing to his body and how much time he may have before the disease progresses.

"There's not a lot of great information," said Jacobs. "This is one of the things about having a rare disease. There's not a lot of information. It's part of the reason why we raise money."

Faced with that uncertainty, Jacobs just keeps working, hoping to squeeze in everything possible while keeping his illness in check.

"I want to do as much as I possibly can while we can," he said.

Tickets are still available for Monday's fundraiser. You can find more information at dimsumgivesome.com