‘A celebration’: SpectreFest ’24 to raise money for Crohn’s Colitis Canada

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Brothers playing together in the early 2000s at a cottage. (Submitted Photo/Mike Vany)

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“We’d regularly go to him for advice as to like what’s out there, the best stuff to play, what’s fun, what games to avoid,” he said.

Then, at the age of 20, Jason came home from college feeling ill.

“He ended up on that visit passing out and had to be taken by ambulance to Saskatoon where they diagnosed him with…ulcerative colitis,” Mike said of the news his brother received in 2002.

In 2018, Jason passed away from surgical complications.

“Throughout that period of 16 years, he was on a battery of different medications and dietary changes and having to deal with the ups and downs.”

Two years after their brother’s death, SpectreFest (named for Jason’s online handle Spectre) was born.

The goal this year for the fourth annual event is to make it the biggest yet as this year is extra special – not only does the event fall on Jason’s birthday on October. 19, it also coincides with Crohn’s and Colitis Canada’s 50th anniversary.

The online event will be streamed on Twitch.TV with hosts Mike (twitch.tv/dgonline) and Corey Duchscher (twitch.tv/Dukey03), beginning at 10 a.m., from Lloydminster and North Battleford will play a mix of classic and new games for a full 24 hours and all donations will go towards the organization for research grants.

According to the organization, one in every 140 Canadians lives with the gastrointestinal diseases. While it isn’t known what causes the inflammation of the GI tract, they affect digestion, don’t allow the body to properly absorb nutrients or even have healthy waste processes.

Jason teaches his niece the art of board games. (Submitted Photo/Mike Vany)

The diseases are lumped under the umbrella term irritable bowel syndrome (IBS) for a number of conditions, of which Crohn’s and Ulcerative Colitis are two.

“That disease is one where it’s not the same for everybody,” said Mike.

“There’s flair ups where you have…those ulcers are forming and there’s remission where they’re healing and then you feel better sometimes, you feel worse sometimes and yeah, he went through that whole gambit.”

The years living with the disease took their toll on the eldest Vany and as his vitamin deficiencies mounted, he became progressively weaker. The decision was made that he should have colorectal surgery and install an ostomy bag.

It didn’t go as planned.

“He didn’t come out from that.”

That moment spurred him to action and after speaking with a mutual friend Duchscher who had shared the gaming world with the brotherly trio, a plan formed to turn tragedy into action.

“About at this time, this was mid-2020 when everybody was stuck at home and so I figured ‘Well, I’m stuck at home anyways, I might as well give it a try,” he said, noting he joined his friend into online streaming.

“We figured this was an opportunity that we could actually use to try and raise some money.”

In the intervening years since the start of SpectreFest, participants have raised nearly $12,000 and last year, there was a member of the organization who had been online and told them $10,000 is what they require to fund a grant.

“We get to say now, because of this event, there is a research grant out there that has Jason’s name on it – that was entirely funded in his honour essentially,” he said.

The Brothers Vany. Jason, Mike and Justin. (Submitted Photo/Mike Vany)

According to the CCC website, a study was published in the scientific journal Nature earlier this summer where researchers had a breakthrough with the discovery of a gene called ETS2. The gene is linked to several diseases that cause digestive tract inflammation and it actually “changes the 3D structure of DNA in immune cells” and activates the genes that cause inflammation.

“They’re able to actually find these patterns in the bacteria that will show potential of developing Crohn’s disease years before even the symptoms appear,” said Mike of the discovery that will help medical teams develop targeted treatments.

Now that the gamming countdown is on, the organizers are working to keep the spectre in the festive spirit.

“We try to keep the event light because we want it to be a celebration of Jason’s life more than kind of remembering that he’s not here with us,” he said.

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julia.lovettsquires@pattisonmedia.com

On X: jls194864