Chef vows knives-out fight against rare neurological illness

Restaurateur suffers from Kennedy's disease
Posted at 6:57 PM, Mar 08, 2017
and last updated 2017-03-08 19:57:07-05

A Milwaukee chef is powering through Kennedy’s Disease, a rare neurological disease that makes his job more difficult than it already is.

As one of the chefs behind Milwaukee's Dan Dan restaurant, Dan Jacobs has a long list of things he wants to do.

But his hands are not as reliable as they used to be, but Jacobs is determined to work as much as he can as long as he can.

Those are the effects of Kennedy's Disease, a neurological condition with no cure. A cousin of ALS, Kennedy's steals strength with the passing of time.

Today it's the 38-year-old chef's hands.

"It hurts, but this is one of those things you want to do," Jacobs said as he struggled to pull a knife through a filet of hamachi tuna.

He also has a disease that makes the most simple tasks painful.

"Today I'm having trouble holding onto stuff, doing little things like buttoning a shirt. It took five minutes to button this shirt," he said.

Some day Jacobs may not be able to walk or speak.

"A lot of people lose a lot of their voice. I sound like I'm losing my voice because I am literally losing my voice," Jacobs said, his voice growing thin and reedy as he stressed the word "literally."

Jacobs thanks his team at Dan Dan, including partner Dan Van Rite, for helping him power through the rough days.

Now, he can thank chefs from around Milwaukee.

They are teaming up for an event Sunday called Dim Sum Give Some, a charity event that hopes to raise $25,000 to fund research into Kennedy's Disease.

Jacobs holds out hope that will help science someday crack his illness.

Until then, he is determined to keep fighting until he doesn't have a choice.

"I don't know how that's gonna go. I don't know when that's gonna happen. Until that happens, I'm just gonna keep doing what makes me happy and what I think is right," he said.

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