Legislation calls for funding for ALS research, caregiver support

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There are now bills in the Minnesota legislature aimed at providing funding for ALS research and caregiver support.

One would allocate $20 million dollars to the University of Minnesota for competitive research grants. The second would create grant programs to fund research and support caregivers.

This is personal for many lawmakers now, as they know one of their own is dealing the diagnosis. Senator Dave Tomassoni, of Chisholm, announced last year he has ALS. He is retiring at the end of 2022, but seeking new funding for ALS is one of his priorities.

The ALS Association, MN/ND/SD Chapter, weighed in. Marianne Keuhn, VP of Care Services, said, “We have a lot of research going on. But we need a lot more to get us to the point where there’s really meaningful treatment for people. Having Sen. Tomassoni speak out about his experience is so important.”

The Never Surrender organization, which puts on the Blackwoods Blizzard Tour, is also hopeful. “For so many years, this was underfunded. About 500 people in Minnesota are fighting ALS, so we don’t have huge numbers. We don‘t get a lot of attention. But the pain is so severe, for the families and the patients,” shared David Kolquist, President of Never Surrender.

Rep. Dave Lislegard, DFL-Aurora, is one of the authors. In a statement, he said, “ALS is a horrible disease that affects people in unimaginable ways, and it’s hard to not see this issue through a personal lens when you witness up close the devastating impact it has. I frankly knew very little about ALS until a dear friend was diagnosed with it. ALS is a cruel disease. It’s unfathomable what it does to people afflicted, and it’s heart-wrenching to see what family members and caregivers have to go through as they help loved ones navigate the condition. Minnesota has long been a leader in health care innovation, and I’m hopeful the investments we’re putting forth in these bills will make a big difference to improve the lives of people living with ALS and get us closer to a cure.”