Dan Van Rite, left, and Dan Jacobs, right, are the chef/owners at DanDan in Milwaukee. The two will join Tory Miller at Estrellon on Nov. 19 for a Dim Sum Give Some benefit for the Kennedy Disease Association. 

Milwaukee chef Dan Jacobs used to just think he was clumsy. He fell a lot, and he had trouble gripping things, but he was only in his 30s. It was probably nothing.

Then in winter 2016, Jacobs and his wife, potter Kate Riley, were working out with the same personal trainer. Jacobs noticed a difference between her work and his.

“Kate was progressing to heavier weights and more reps and I wasn’t,” said Jacobs, who owns Dandan and EsterEv in Milwaukee’s Third Ward. “It wasn’t about being a man, or like ‘I should be able to do more.’ But physically I am bigger than she is. I should be able to lift more weight than her.

“That was when we realized something was wrong.”

After some neurological tests to rule out ALS (Lou Gehrig’s Disease), multiple sclerosis and Parkinson’s disease, Jacobs got his diagnosis: Kennedy’s Disease, which is progressive, genetic and affects muscle function. His younger brother has it as well.

Jacobs can’t do anything to slow the progression of the disease, but he can cook, and he can organize. On Monday, Nov. 19, Jacobs and his Dandan business partner Dan Van Rite will partner with chef Tory Miller at Estrellon in Madison.

Tickets for a 10-course dinner with wine cost $65; proceeds will benefit the Kennedy’s Disease Association.

Jacobs been running benefits for the KDA since October 2016 under the umbrella of Dim Sum Give Some. For the first event, Jacobs invited some 30 restaurants, including Forequarter and Heritage Tavern from Madison and Little Goat from Chicago.

Chefs “do two things really well — we support each other, and we raise money,” Jacobs said. “No one said no, everybody was full in. The community came out strong.”

Jacobs estimates that Dim Sum Give Some has raised about $50,000 over the past two years. He thinks he’s the second largest donor toward the KDA’s research grants.

“There’s a lady in Texas who does a golf thing that outraises me, but I’m catching up,” Jacobs said.

Though all the chefs involved have several restaurants spanning many cuisines, the collaboration on Nov. 19 is being billed as a blend of Estrellon’s Spanish influence and EsterEv.

Located inside the Chinese-influenced Dandan, EsterEv opened serves a contemporary American tasting menu a few times a week. It opened two years ago and made the James Beard long list for Best Chef-Midwest for the first time this year.  

The event could not only raise money, it could raise Jacobs’ and Van Rite’s profile among Madison diners.

“We might lean a little bit into the Spanish influence,” Jacobs said. “For those people in Madison who haven’t had a chance to eat the stuff me and Dan have done, Tory’s giving us a great opportunity to showcase what we do to a community that may not be as familiar with us.”

Jacobs has gone public with his personal struggle, including a recent profile in the national food-centric website Eater, at a time when more and more chefs are doing so. 

In 2017, the New York Times published a profile of celebrity chef Sean Brock in which he talked about the autoimmune disease that threatens his vision and a stint in rehab. Kat Kinsman published a memoir about her struggles with anxiety and started the industry-focused resource site Chefs With Issues.

When Anthony Bourdain died earlier this year, “it opened the floodgates for honest conversations” about physical, mental and emotional health issues, Jacobs said. It made it more acceptable to say “I need to seek help.”

“That guy was full of so much bravado and he had issues, he had problems,” Jacobs said. “Maybe it’s OK for us all to reach out.”

Jacobs has noticed changes in his physical capabilities from year to year. He’s literally losing his voice, as the muscles start to deteriorate. He has are good days and bad days.

Still, he and Van Rite have continued to grow. In addition to Dandan and Esterev, they also own Batches Bakery and opened a third spot, the French-influenced Fauntleroy, in July.

As he continues to lead his kitchens, Jacobs has worked to find a bright side to what’s happening to him.

“I have learned to rely on people a little bit more,” Jacobs said. “I was always the guy who was like, ‘I’ll just do it, I’ll do it all.’

“Having physical limitations, where I have trouble gripping stuff with my hands, I have trouble walking around and I have to use a cane — I have to rely on other people. It’s made me a better teacher.”

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Since 2008, Lindsay Christians has been writing about fine arts and food for The Capital Times. She loves eating at the bar, going to the theater, fine wine and good stories. She lives on the east side with her husband, two cats and too many cookbooks.