Dementia gene runs in this Washington family, but he’s fine — so far

John Janda inherited the mutated gene that stole his mother’s mind. He doesn’t have the disease, and doctors don’t know why — but a University of Washington professor has been studying the Jandas and other affected families for more than 35 years.

MARBLEMOUNT, Skagit County — John Janda knows he takes after his mother.

At 68, the graying building contractor is sentimental, just like she was. He smiles indulgently as he shows off photos of his 9-month-old grandson; he tears up at the memory of losing his dad in a construction accident more than 40 years ago.

“I’m emotional,” he said. “I know I got that from her. They call that ‘a kind heart.’ That’s one of the best blessings there ever was.”

Along with the blessings, however, Janda inherited what many would call a curse: a genetic mutation that causes a devastating brain disorder known as frontotemporal dementia, or FTD.

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His mother, Lucille Janda, had the mutation and the disease, a relentless illness that ravaged her personality starting in her late 40s and eventually robbed her of the ability to think, speak and walk.

John Janda has the same mutation, doctors say. But unlike his mother, who died in 2014 at age 93, Janda has shown no sign of the disorder, more than 15 years after symptoms typically appear.

“I can’t tell you that I feel anything,” said Janda, a lifelong builder who operates a wood shop, metal shop, sawmill and lumber kiln on his remote property about 100 miles northeast of Seattle. “I could go on my job and do anything I did 25 years ago. The knowledge is still there. I’m still gaining information all the time.”

That makes him a medical mystery, a puzzle to scientists who can’t say why Janda has so far been spared his mother’s fate.

“The overwhelming majority of the people who have this mutation develop the disease, but there are a few who don’t,” said Dr. Thomas Bird, a University of Washington professor of neurology and medical genetics.

“We would love to know why. What a terrific clue that would be to treatment of the disease.”

Bird was part of the team that first identified the mutation in the MAPT gene, one of three now linked to FTD. He has been studying the Jandas and other affected families for more than 35 years. Last year, he published a paper in the American Journal of Medical Genetics detailing the family’s…

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