REGIONAL- The only thing better than being out on a snowmobile cruising regional trails for three days would be to help others by doing it, and that’s what 250 riders in last week’s 23rd annual Black Woods Blizzard Tour did. They raised a whopping $1.6 million to help in the fight against amyotrophic lateral sclerosis, or ALS, along the way.
One of two major annual fundraisers sponsored by Hermantown-based Never Surrender, Inc., this year’s take is helping to bring cutting edge ALS experimental trials to northern Minnesota. They could lead to major breakthroughs in treatment of the rare debilitating motor neuron disease, one with no cure that has a higher incidence rate in the Midwest than anywhere else in the country.
“We’ve made a huge donation and investment in the HEALEY ALS Platform Trials,” Never Surrender President David Kolquist said. “Trials are going on throughout the country, and our funding now is bringing these trials to Duluth, partnered with Essentia Health. So now if you have ALS, anywhere in northern Minnesota, northern Wisconsin, or the UP of Michigan, you’ll be able to go to Essentia Health right in Duluth and get the latest and greatest in trials and therapies for ALS.”
That’s welcome news for the family of the tour’s “rookie of the year” fundraiser, Tiffany Tomassoni. Her father-in-law, well-known state Sen. David Tomassoni, of Chisholm, announced last July that he had been diagnosed with ALS.
“This is the largest snowmobile tour for a fundraiser in the world, I believe – it’s amazing,” Tomassoni said. “You can really see the positive effect it’s having on ALS in general, and that was shown this year by the HEALY trial that David’s now a part of.”
This was Tomassoni’s first time to actually ride in the event, but not her first time being involved with it.
“I had volunteered for the Blizzard tour years ago – a couple babies ago,” she laughed. “I was already really familiar with it, and I’ve donated to the cause. But this year really hit home after we got the diagnosis (for David) last summer. I just wanted to get even more involved, raise awareness and try to raise some money toward trying to find effective treatment and also a cure.”
With the help of family and friends, Tomassoni exceeded her goal to raise $10,000, taking in $11,420 in donations, the highest of any first-time rider and 19th among all riders. Her mother and stepfather also participated in the event, Tomassoni said, and together they raised more than $15,000.
But as important as the fundraising is, Tomassoni said the relationships formed with other participants during the three-day trek, whose lives have also been directly impacted by ALS, is equally consequential.
“My favorite part of the entire experience was just gaining that sense of community with other people who have been there, because other people don’t really get it until you’re in it,” Tomassoni said. “It was just an outpouring of support because everyone there had a brother or a father or a mother (with ALS). It was the first time since the diagnosis that we really found a community of people who rally around you, who tell you that you can call any time of the day, and you just met them five minutes ago. In the future, I want to be able to do that for someone else.”
Tomassoni said her father-in-law has coped remarkably well, despite his diagnosis.
“He is by far one of the most amazing men I’ve ever met in my life,” she said. “He just has a positive attitude. He’s staying strong. He was just at the state capital last week, still out there working and representing the district. He wants to make a positive difference, given this diagnosis, and raise awareness and funding. It’s been amazing to see how he’s trying to find the bright side of it.”
Tomassoni said that her father-in-law has experienced some decline in motor function, which has given the family personal experience with the support Never Surrender can provide.
“It’s amazing what Never Surrender is doing for families with ALS,” Tomassoni said. “They’ve sent tools to help, and so we’re seeing both ends of this, what a great organization this is, how amazing the funds are that they’ve already contributed, and where we still have to go in the future.”
Return to the Bay
When the riders revved up their engines in Proctor at the start of the tour last week, Fortune Bay Resort Casino was the ultimate destination on day one. It was a welcome return for the tour, as Fortune Bay wasn’t able to participate last year because of COVID-19 restrictions.
“Brian Anderson up there has been a great partner and helped us out,” said Kolquist, who noted the resort has been involved with the tour since its inception. “There was one year we didn’t have any snow, so we created the Blizzard Tour Olympics. We had a bunch of games and they helped us with that. They’re really a partner with what we do, and they’ve been very good to us.”
Mindful of the current ongoing COVID surge, Fortune Bay took the additional precaution of serving the evening banquet in two groups, Tomassoni said. Riders who have collected more than $100,000 were recognized with Blizzard Tour Hall of Fame awards.Tomassoni was recognized as rookie of the year, and the musical duo Deuces Wild from Duluth, who rode with the tour that day, again donated their performance talents as they have in years past, Kolquist said.
“This is an event we truly enjoy sponsoring,” said Anderson, Fortune Bay’s Director of Public Relations. “The work they do is very inspiring, and we are fortunate to be part of it. David Kolquist gave a motivating speech to those gathered for the event, so it is easy to see why all of the participants and sponsors are so passionate about the event.”
After breakfast Friday morning, tour participants headed off to Superior Shores, and completed the trek back to Proctor on Saturday. A “welcome home” celebratory dinner at Greysolon Ballroom in Duluth completed the activities.
With a mixture of humility and excitement, Kolquist talked about how the tour has grown since its first year’s fundraising of $15,000 to an event that has raised over $1 million for ALS for six consecutive years. He praised the contributions of around 100 volunteers who make the event possible.
“We have one employee, that’s all we have,” Kolquist said. “We don’t have an office. We’re about helping people with ALS. We’re all for volunteers.”
Kolquist was also excited to share the news that in December the Biden administration authorized $100 million a year for the next five years for ALS research. Three years ago, the federal funding for ALS research was only $5 million.
“Can we solve ALS? Yes, we just need to invest more in ALS,” Kolquist said. “So, we are making a difference, and we’re going to see significant changes in ALS here in the next couple of years.”
And while the research ramps up, Never Surrender will forge ahead with its fundraisers and support, driven in part by Kolquist’s memories of his brother, Kevin, who battled ALS for 11-and-half years before succumbing in 2007 at age 52.
“In 1995, my brother said, ‘Hope drives life,’” Kolquist said. “What he was meaning by that is that if you don’t have people raising funds and giving you hope, it’s a very hard disease to battle. What our events do is certainly give hope by raising money and having more people studying it to try to figure out the ALS puzzle.”