By David DeRocco

A skilled research scientist with a potentially crippling disease enters a race against time to find a cure for the illness that’s also afflicting her mother – but not before rocking out with her super cool bandmates at a series of fundraisers designed to raise awareness of the cause.

Sounds like a heartwarming Netflix original, or maybe even a feature film follow up to the Dennis Quaid thriller, DOA. Unfortunately, it’s the all-too-true story being lived by Tamara Maiuri – research scientist by day, ELI AND THE STRAW MAN trumpet player and percussionist by night. Saturday, March 2^nd, Tamara and her bandmates take the stage at the Seneca Queen Theatre to play their latest concert for the cause, raising money for the Huntington Society of Canada in support of its efforts to fight Huntington’s Disease (HD). It’s an illness that hits close to home for the musician/scientist.

“I actually did my training in cancer research, but right when I was about to graduate and go get a job we found out my mom has Huntington’s Disease,” explained Maiuri, a researcher with McMaster in Hamilton. “She has the gene, so I thought why would I want to work on cancer research when I can work on this. There were two labs in Canada working on HD at the time and one of these was in Hamilton close to home, so that’s where I went.”

Huntington’s Disease is a hereditary, neurodegenerative illness with physical, cognitive and emotional symptoms. The disease is marked by degeneration of the brain cells leading to chorea (involuntary, unpredictable body movement) and progressive dementia. It’s a serious disease that receives relatively low public attention despite its debilitating effect on the mind and body.

“There are a few reasons for that,” explained Maiuri, who eight years ago committed her career to finding a cure for HD. “I think probably the biggest reason is it’s a relatively rare disease not as common as Alzheimer’s or Parkinson’s. But there’s also a lot of stigma attached to it. Until very recently when there has been some promising therapies coming down the pipeline, it was something you kind of didn’t want to admit to having for multiple reasons.”

Another reason people may not have wanted to discuss their HD diagnosis is because of the shocking truth about genetic discrimination laws in Canada.

“Canada doesn’t have laws protecting against genetic discrimination,” explained Maiuri, who has a 50/50 chance of contracting the disease as a result of her mother’s diagnosis. “So for example, if you wanted to get insurance you can’t if you have the Huntington’s Disease gene in your family. I know someone who wanted to open a clinic as a chiropractor. She couldn’t open one until she took the test to ensure she was negative. Thankfully she was, but if she wasn’t she wouldn’t be able to open up her clinic. So there’s a lot of reasons for people to try and keep it on the down low.”

Thanks to the work being done by the Huntington Society of Canada, however, Maiuri says there is hope on the horizon for those suffering from HD.

“The Huntington’s Society has helped play a big part in pushing forward legislation with the Canadian government to make sure that we have protection against genetic discrimination. They’ve made some progress and things are moving in the right direction, but this is crazy – even the U.S. has better laws to protect people against genetic discrimination than we do in Canada.”

Current national numbers indicate one in 7,000 Canadians has HD. The number of HD diagnosis in Niagara is unclear, as many families have not come forward to seek help. Robert Martin, Niagara rep for the Huntington’s Society of Canada, says the fundraising series of concerts hosted by Eli And The Strawman go a long way to building awareness and reducing the social stigma of the disease.

“It can be difficult to get the word out,” said Martin. “Fundraisers like this one help get the word out on a slightly larger scale. An evening of great music delivers and creates a strong connection with most, which in turn provides a level of awareness that is usually not attainable through other events.”

Despite the urgency of her research and the very real possibility of contracting HD, Maiuri says the concerts are more a celebration and an opportunity for individuals and families affected by the disease to join together for the cause.

“We’ve been focusing a lot on these HD benefit shows,” said Maiuri, who performs along with her husband/guitarist/vocalist Eli Maiuri, guitarist James Gizzie, bassist Philip Bosley, lap steel/guitarist Nathanial Goold and drummer TJ Rogers in the Niagara-based collective. “We enjoy them very much. We always get a great response from the crowd. And given the venues, we’re not competing with whatever’s on the TV in a sports bar. This is our seventh or eighth benefit show.”

After years of jamming together, Eli And The Straw Man released their self-titled debut in 2017, a 10-track collection of rootsy hybrids recorded at Hamilton’s Catherine North Studios. While musicians in the band are passionate about their music, they're equally committed to the cause, helping to raise over $60,000 through their concerts. That effort continues to inspire Maiuri in both her music and research. And while her right brain creative side harbours dreams of one day playing music full time, Maiuri’s left brain logical side is committed to finding a cure to the disease that one day could negatively affect her ability in both.

“I like going to work every day because we’re making headway in our lab every day. I try to keep a positive outlook but I feel like I’m racing against time. If I inherited this gene from my mom, then I only have so much time to figure this out before I start to lose my brain function. And you know what’s crazy? I’m not the only one. There are a quite a few researchers I know in the HD field that are in the same boat. If you’re interested in science and research and you’re from an HD family, why would you work on anything else!”

Tickets for the 3^rd annual Niagara Huntington Society Concert and Silent Auction are available at the Seneca Queen Theatre. The show also features The Mountain Road Band performing traditional Irish music, along with the return of Hamilton Folk Music award winner Steve "SG" Sinnicks. 

To book Eli & The Straw Man for your function, contact them at eliandthestrawman@gmail.com.