Savoring time: Owner of popular restaurant, facing incurable disease, concerned not for himself, but others

MILWAUKEE -- On Sunday, March 12th, those from more than 30 of the top restaurants in Milwaukee will join forces to support one of their own. Dan Jacobs is one half of the duo that opened DanDan in the Third Ward during the summer of 2016. For the past year, he has fought a quiet battle against an incurable disease.

"It's always early in the morning. He's the one who sets the alarm clock -- no matter how early I have to be at work," Dan Jacobs said of his dog, Baxter.

Of the many ingredients that make up Jacobs' life, time is the hardest to measure. It slows during his morning walks with Baxter. It picks up on his way into the city he now calls home, and it doesn't stop from the moment he walks in the door, until the last customer leaves DanDan.

Dan Jacobs and his dog, Baxter

"(The walks are Baxter's) best part of the day. I'm not going to take that away from him. (At DanDan), you don't notice the time. It flies by and it's fun," Jacobs said.

Even amid the controlled chaos that is life in a professional kitchen, Jacobs carves out time -- making sure to savor as many of the small moments as he can.

Dan Jacobs at DanDan

"Peeling potatoes, turning apples. I don't have to do any of those things anymore, but I like doing those things. I guess the little tasks are what I enjoy most and those are the things that are starting to go first," Jacobs said.

Since moving to Milwaukee in 2011, the Chicago native has spent his time running some of the best restaurants in town. His latest venture, DanDan, is a hot spot in Milwaukee's Third Ward.

Dan Jacobs at DanDan

"I've always been kind of enamored with Chinese-American food. The bold, assertiveness of everything. Everything is really in your face," Jacobs said.

The restaurant is a collaboration with friend and fellow chef Dan Van Rite.

"Him and I are like yin and yang," Van Rite said.

A year ago, when DanDan was just a morsel of an idea in their mind's eye, Jacobs was served something totally unexpected. Not a dish -- but a diagnosis.

Dan Jacobs at DanDan

"I thought I was just out of shape forever, and then it was like, 'No -- this is actually something. Something more to this,'" Jacobs said.

After laboring through some fairly basic activities, Jacob went in for a series of tests. Doctors feared it could be ALS, multiple sclerosis or Parkinson's. Jacobs learned it was a rare condition known as Kennedy's disease.

"You had a moment where it's like, 'Oh man, great. So I don't have ALS or any of the rest of this. But I have this disease, Kennedy's, that there's also no cure, no treatment and nobody knows anything about it,'" Jacobs said.

Dan Jacobs

Kennedy's is a degenerative, neurological disease. Jacobs' muscles are started to waste away.

"Some days are really, really bad and I can't do much. It's like my hands will lock. They'll shake. When my right leg is real shaky, I have to be really careful about how I walk, because I'll go down," Jacobs said.

It's even affecting his throat.

"My voice in general sounds like I'm losing my voice, and that's because I'm literally losing my voice," Jacobs said.

While patients with Kennedy's typically have normal lifespans, it goes without saying that a chef's livelihood relies on his ability to move in a kitchen, let alone swallow and taste. His staff already helps when needed.

“Kara opens up cans for me,” Jacobs said of sous chef Kara Fauerbach. “I give glass jars to people to open up all the time.”

That support has helped ease the burden.

Dan Jacobs at DanDan

“It’s beautiful to be able to joke around about it because it makes it so less like this death sentence, and way less scary," Jacobs said.

“He likes to tell me when he’s lifting weights or stuff like that, or when he’s running a few miles, and I think that’s awesome," Fauerbach said.

But the worst part is actually that he is not going through this alone. Kennedy’s is genetic, and while Jacobs and his wife don’t have children, it turns out his brother also has the disease -- and the same goes for his niece, who is under the age of two.

“90% of women don’t show any signs of physical degeneration, but they’re carriers. At some point, she’s going to have to make a decision whether or not she’s going to want to have children," Jacobs said.

It’s that fact that has given Jacobs a purpose beyond his culinary pursuits.

Dan Jacobs at DanDan

On Sunday, those from more than 30 restaurants from around the city will join forces for Dim Sum Give Some, a cocktail party where the proceeds will go towards Kennedy’s research.

“In 20 years, I’m going to be 59, but in 20 years, she’ll be 21 years old. This has always been something that like, ‘If this can help her or help people become more aware of it, awesome,'" Jacobs said.

There’s no way for Jacobs to measure the time that he has left to do the things that he loves, so he’s chosen a simple approach.

“Walking the dog, going on a bike ride, taking a trip. Anything like that, take advantage while you can. There’s no reason why you should wait on those things," Jacobs said.

And that way, like so many of the people that have eaten his food, he will be fulfilled. 

“I have fun with what I do, and I’m just going to try and keep doing that for as long as I possibly can," Jacobs said.

CLICK HERE to learn more about Sunday's fundraiser.