Milwaukee chef Dan Jacobs shares his Kennedy's Disease diagnosis on 'Top Chef: Wisconsin'

Milwaukee chef Dan Jacobs served another impressive dish on Episode 2 of “Top Chef: Wisconsin,” but while tensions from the competition may have been running high, the secret Jacobs was keeping was weighing on him, as well. 

After the Elimination Challenge, Jacobs let his secret out.  

“If you see me moving slow, it’s not because I’m old,” he said. “I have this thing called Kennedy’s Disease.” 

Kennedy’s Disease is a recessive genetic neuromuscular condition similar to ALS that causes muscle atrophy and slowly deteriorates the ability to swallow, speak, walk and use hands for daily tasks — tasks like the ones he takes on every day in the kitchen. 

According to the Kennedy’s Disease Association, the disease is both untreatable and incurable, and it’s estimated that it affects one in 40,000 people. 

Symptoms progress with age, and usually appear between the ages of 30 and 50. Jacobs was 38 when he was diagnosed in 2016, the same year he opened his restaurants, DanDan and EsterEv, with chef and business partner Dan Van Rite. 

In 2017, Jacobs told the Journal Sentinel that his pain was constant, but the level fluctuated from day to day. "You just wake up and wonder, 'How is this day going to be?’,” he said. He also said he had difficulty swallowing some foods that he cooks, like dry bread. It can feel like he’s choking. 

In “Top Chef: Wisconsin” Episode 2, his hands were shaking as he used tweezers to plate his dish. 

“That was 30% the competition, 70% the Kennedy’s Disease,” he said. At the time, his teammates weren’t aware of his health condition. 

But Jacobs is an advocate for Kennedy’s Disease awareness. Since 2017, he and Van Rite have hosted an annual charity event, Dim Sum and Give Some, wherein local and national chefs cook food for ticketed guests to raise money for Kennedy’s Disease research. 

Since its inception, Dim Sum and Give Some has raised more than $120,000. 

We've barely gotten a glimpse of how the disease has affected Jacobs’ performance on “Top Chef,” but we do know he’s moving on to Episode 3, so he’s managed to impress so far.  

“We forget that Dan doesn’t move as quickly as the other chefs in the kitchen and we’re all respectful of that,” “Top Chef” perennial judge Gail Simmons said when she was in Milwaukee last summer. “He's had to become much more efficient in the way he uses his time. And as you watch him cook and he’s doing it well, it makes you think, while all the other chefs are rushing so fast, maybe there is something to be said for taking a minute and moving with more purpose and intention.” 

Jacobs said he sees his time on the show as an opportunity to raise awareness of the disease.  

“A big reason I wanted to compete on ‘Top Chef’ was to inspire people with disabilities," Jacobs said. "I hope this platform allows me to inspire people who are differently-abled to pursue their passions, especially in the culinary world where physical constraints can be a big barrier.”