The good fight with Eli & the Straw Man
Every day, musician Tamara Maiuri wonders if this is the day she’ll see the symptoms. A strange twitch. Loss of energy. Lack of balance. Little things most people might don’t think much of, but she thinks of constantly.
They’re among the early signs for Huntington’s disease, which attacks nerve cells in the brain and gradually leads to dementia. Her mother has it, which means she has a 50 per cent chance of inheriting it.
“It is on my mind every day, especially because I work in a (Huntington’s disease) research lab,” says the trumpet player and percussionist for Niagara Falls band Eli & the Straw Man. “It’s very much at the forefront of what I think about every day.”
And most nights, especially this time of year. For the third straight year, she’ll play a Huntington’s fundraising show Feb. 9 with the band she formed with her husband Eli in 2014. They return to the Seneca Queen Theatre in Niagara Falls, where they raised nearly $9,000 last year.
It was one of four benefit shows in 2017 which raised more than $30,000.
For Maiuri, who works as a researcher at McMaster University, it’s important to be pro-active instead of dwelling on the bad.
“It’s basically something that every HD family has to live with,” she says. “Everybody deals with it differently, but my take on it is that I’m doing everything I can about it. You can’t do what you want, you can’t treat it at this point, but it makes you feel better when you participate in something that will hopefully work out.”
Along with husband Eli, the band’s lineup includes guitarists James Gizzie and Nathaniel Goold, bassist Philip Bosley and drummer TJ Rogers. Last year saw the release of their first album, Light the World.
This year’s show at Seneca will have special guest Nathan Warriner, along with several items up for auction in the lobby.
In addition to her day job and the benefit shows, she also attends Huntington conferences. The disease is a constant presence in her life, but shows like the Seneca concert are a musical release.
“Sometimes I think it’s kind of crazy, but you just kind of get used to the idea of it,” she says. “It’s scary, but sometimes when you face your fears and dive in voluntarily, it almost makes it a little bit easier to cope with, personally.”