Jary Larsen’s late brother Peter learned to play the clarinet and saxophone as an adult. A life-long jazz and classical music fan, Peter soon became adept at both. But he gradually lost the ability to play the instruments, or even put them together, as his FTD symptoms worsened. Peter died in 2013 at the age of 64, seven years after his diagnosis.

Jary has held onto his brother’s clarinet, and even tried to learn to play it himself, although never to the same level that Peter did. But Jary has found other ways to honor his brother’s memory, including by serving on the AFTD Board of Directors.

As detailed in a January 2020 Boston Globe article, Peter had a variation in the gene GRN, which has been linked to FTD. In the years since his brother’s diagnosis, the article said, Jary “determined that at least 20 relatives going back four generations” also had the GRN gene variant, including his father.

Jary, who previously served as AFTD Board Chair from 2013 to 2016, said he was “absolutely thrilled to be invited to return to the Board” in 2019. A neuropsychologist at the University of California, San Francisco, Jary’s initial Board-related interest was FTD research. But since becoming affiliated with AFTD, he said, “it did not take me long to learn that while research is extremely important, it’s built on the back of advocacy, support, and all of the other services AFTD is providing,” including support groups, Comstock Grants, informational publications, and events such as the AFTD Education Conference.

Indeed, Jary said that attending the Education Conference each year has been the highlight of his Board tenure. “I always find it interesting to meet people who have found AFTD, to hear their stories, and to see how they’ve benefited from AFTD – and to see the level of resilience that families facing FTD have,” he said. “AFTD is creating this environment that is extremely welcoming of individuals with FTD.”

For Jary, however, it always comes back to research. By funding research directly through awards such as Pilot Grants and Holloway Fellowships, and by increasingly cultivating relationships with pharmaceutical companies, AFTD is “laying the groundwork to help facilitate FTD research – not just basic research to try to understand the mechanisms of the disease process, but also to work specifically toward clinical trials,” he said.

Jary says he is proud to represent AFTD at a time when “we are understanding these disorders more than ever, and doing a better job of educating neurologists and psychiatrists about how to diagnose these disorders.” But, he added, “that doesn’t mean our job is done. In fact, it’s made us that much more aware of how much more work has to be done.”