Linde Jacobs, a Minnesota nurse who has devoted herself to genetic-FTD advocacy after learning that she and her sisters share the same MAPT mutation that caused her mother’s FTD, was profiled by the CBS affiliate in Minneapolis on June 2.

At just 50, Jacobs’ mother Allison began displaying some of the hallmark symptoms of behavioral variant FTD: impulsive behaviors, loss of social awareness, and actions completely out of character for the loving physical therapist and grandmother she had always been. She inappropriately touched strangers in public, even pulling up their pants when she noticed their underwear showing.

Doctors, however, dismissed her symptoms as depression or psychological issues. FTD wasn’t on their radar, even as Allison’s impulse control deteriorated. She began shoplifting, and ended up in jail following a traffic violation, illustrating how people with FTD can inadvertently run afoul of the criminal justice system.

The breakthrough came from an unexpected source—a fellow inmate named Angie who recognized what medical professionals had missed. “Your mom doesn’t belong here,” Angie wrote to Jacobs’ sister. “I think she has dementia.” This stranger’s compassion provided the key that unlocked years of medical mystery.

Allison was diagnosed with bvFTD caused by a variant in the MAPT gene, one of the three most common genetic variants linked to FTD. After undergoing genetic testing, Jacobs learned that she has the same FTD-causing variant, as do both her sisters.

“I was speechless in that appointment,” she said, “because I’d never been delivered news like that before. It was so shocking that I didn’t really know how to grasp it and to internalize it.”

Jacobs’ mother passed away in 2021 after a fall; she was just 62. But from this loss emerged Jacobs’ determination to ensure other families wouldn’t face the same confusion, to choose advocacy over despair.

She began making connections with leading researchers conducting promising mouse model studies. She spread FTD awareness by telling her story in a front-page New York Times article published late last year. And she has joined forces with AFTD, even participating in AFTD’s first-ever Genetic FTD Symposium, part of last month’s AFTD Education Conference in Denver.

The CBS Minnesota story documents the emotional moment when Jacobs met Angie, now out of jail and sober for seven years, after connecting via Facebook. Their story offers crucial reminders: diagnosis often comes from unexpected places, advocacy encourages research, and hope can flower in our darkest moments. As potential FTD treatments advance through research pipelines, champions like Jacobs remind us never to give up.