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Granite Falls mayor's emotional testimony among those hoping to advance ALS research legislation

A bill authored by Sen. David Tomassoni would provide $20 million for research into ALS, or Lou Gehrig's disease. Tomassoni is living with ALS, as is Granite Falls Mayor David Smiglewski, who was among those who testified for the bill.

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Mayor Dave Smiglewski

ST. PAUL — After emotional testimony, including that from Mayor Dave Smiglewski of Granite Falls, a Minnesota Senate committee on Tuesday moved a bill forward that would provide $20 million for research into amyotrophic lateral sclerosis, known also as ALS or Lou Gehrig’s disease.

“Wouldn’t it be amazing if Minnesota became the place (where) we found a cure for this disease? We’d all be proud,” said State Sen. Tom Bakk, I-Virginia, who stepped in to speak for the bill on behalf of its author, Sen. David Tomassoni, I-Chisholm. Bakk spoke to the Senate’s Higher Education Committee, which is chaired by Tomassoni.

The Minnesota Senate on Thursday, March 10, approved a proposal to fund research into prevention, treatments and a cure for amyotrophic lateral sclerosis, also known as Lou Gehrig's Disease. Sen. David Tomassoni, of Chisholm, carried the bill as he battles the disease.

Speaking remotely and with the aid of an electronic device, Tomassoni told the committee that last September he could drive, dress and feed himself. “Today, I can’t do any of them.”

Tomassoni said research is needed to give hope. “The future needs to be full of hope that the next generations will be ALS-free.”

The full Senate unanimously approved the bill on Thursday. There is a companion bill in the House as well.

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On any given day, there are 450 Minnesotans living with ALS, according to Bakk. On average, two Minnesota residents are diagnosed each week with the disease, and the same number die, according to Marianne Keuhn, vice president of care services for the ALS Association serving Minnesota and the Dakotas.

Former Gopher and NBA basketball player Chris Engler was among those who testified to the debilitating effects of the disease, and how its progression is different in individuals. “Nobody should have to go through this,” he told the committee.

Former Minnesota Twin Kent Hrbek told the committee that the disease claimed the life of his father in 1982. At the time of his father's diagnosis in 1981, there was an outreach support group of six at the University of Minnesota, and little more.

Hrbek has made it his goal for 38 years now to raise funds for ALS research. He estimates that the efforts have raised maybe $20 million to $25 million.

This bill, which would provide $20 million for research by institutes in Minnesota, could be transformative, according to Dr. David Walk, a neurologist with the University of Minnesota. “Funding in this bill can help to unlock the biology of this disease and design treatments that can improve and extend the lives of those living with ALS,” he said.

Tomassoni - ALS news conference
State Sen. David Tomassoni, I-Chisholm, on Tuesday, March 1, 2022, introduces a pair of bills to provide funding to caregiving services for people with ALS and research to treat and cure those with the disease.
Dana Ferguson / Forum News Service

Mayor Smiglewski, who turned 69 on Thursday, told the committee that he was fortunate to be diagnosed about two years ago with a slow-progressing form of ALS. His close friend, Jerry Ostensoe, with whom he worked for many years, has not been so fortunate.

Diagnosed about three years ago, Ostensoe is now totally disabled, according to Smiglewski. He’s now cared for at home by his wife and friends, including the mayor.

Smiglewski told the committee that he was close friends with former State Sen. Gary Kubly of Granite Falls, who succumbed to ALS while in office 10 years ago this month.

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There are currently five people in Granite Falls living with ALS, Smiglewski told the committee. In a community of just under 3,000 people, this is significantly higher than any other statistical average, he said.

For 90% of people who are diagnosed with ALS, there is no known reason for its cause, according to Keuhn. Military veterans are twice as likely as the general population to be afflicted, she said.

Bakk told the committee that Smiglewski’s testimony and the high number of people per capita in Granite Falls makes him wonder if there is an environmental factor. He also pointed to the disproportionate number of professional athletes who are diagnosed with the disease.

Tomassoni spoke with MPR News Thursday, July 22, about how he’s navigating life with an incurable disease.

As a close friend to Sen. Tomassoni, Bakk also told the committee how his friend kept going to medical appointments on Fridays to learn the cause of symptoms that he at first joked as being those of advancing age. One Monday, Tomassoni returned with the news: “Tom, I’ve got ALS,” Bakk related.

“He said something I will never forget,” said Bakk. “‘I’m not afraid of dying. I’m afraid of what I have to go through to get there.'”

Bakk said it’s his hope the legislation will be approved to fund research that will be able to help those yet to be diagnosed. At the hearing’s onset, he noted: “It may be a very curable disease but we just don’t know because we haven’t done the research.”

Tom Cherveny is a regional and outdoors reporter for the West Central Tribune.
He has been a reporter with the West Central Tribune since 1993.

Cherveny can be reached via email at tcherveny@wctrib.com or by phone at 320-214-4335.
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