29 March 2022
ST. PAUL, Minn. (WCCO) — The Minnesota Legislature, with overwhelming bipartisan support, approved $25 million for ALS research and caregiving Monday, which advocates say is the largest investment by any state in the country to find a cure for the rare neurological disease.
The effort is personal for Sen. David Tomassoni, I-Chisholm, who was first diagnosed last summer. The disease has progressed quickly: the long-time legislator from the Iron Range said that in September, he could still drive and dress and feed himself, but now can’t do any of basic parts of a routine.
“Lou Gehrig died of ALS in 1941. Little to no progress in finding a cure has been made since,” Tomassoni said. “Hopefully, this bill will go a long way to finding a permanent stop to any progression whatsoever. It may not happen in my lifetime but the future needs to be full of hope that the next generations will be ALS free.”
There is $20 million for the Office of Higher Education to award grants for research into prevention, treatment, causes and cures. Only Minnesota institutions will be considered for the program, which the Minnesota Department of Health will administer.
The legislation passed the Minnesota House last week and got final approval from the Senate Monday, sending the bill to Gov. Tim Walz’s desk for signature.
“This is a game changer for the ALS community, and it is a huge boom for the state that we are going to be essentially a leader in ALS research, and that is so exciting,” said Jennifer Hjelle, CEO of the ALS Association chapter of Minnesota, North Dakota and South Dakota.
She said other states have funded research, but not with an amount this large. She noted that the financial support from the legislature will continue research already underway at the University of Minnesota, Mayo Clinic and others, and open the doors for more Minnesotans to be part of the studies.
“I want us to be part of the global conversation about how we’re putting an end to this disease,” she said.
Mark Buermann, a 60-year-old resident of Prior Lake, has been living with ALS for 14 years and is already part of a clinical trial In San Diego for a drug targeting the progression of the disease. He’s excited about the research coming to Minnesota, and praised the state for being a leader.
“When I’m introduced to people that are recently diagnosed with ALS, one of the first things they ask me is ‘Where can I go? What can I do? What clinical trials are other there? What’s going to help?’” Buermann said. “I hope other states will get the message.”
The legislation also includes $5 million for caregiver support programs, like home health respite care. Hjelle said upwards of 70% of caregivers for people living with ALS can spend 30 hours per week or more just helping their loved one.
Rep. Anne Neu Brindley, R-North Branch, gave an emotional speech on the House floor recalling her late husband’s battle with the disease. She thanked the legislature for moving forward with bill.
“You know this is where the disease is heading, and telling that to your tiny kids is tough” Brindley said. “So I really believe what we’re doing today is providing hope for families more than anything.”