Minnesota Lawmakers Earmark $25M for Research, Caregivers

Lindsey Shapiro, PhD avatar

by Lindsey Shapiro, PhD |

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Minnesota lawmakers have passed legislation that will provide $25 million for amyotrophic lateral sclerosis (ALS) research and to support ALS caregivers in the state.

Under the law (SF 3372), the Minnesota Office of Higher Education will receive $20 million to award research grants to scientists studying all areas of ALS research, from disease mechanisms and causes, to preventions, treatments, and cures. Applicants for the funding must work at research facilities, universities or health systems in Minnesota.

The remaining $5 million will go to the Minnesota Department of Aging and is intended to fund local organizations that provide support to ALS caregivers. The funds also may be used to provide respite care, or short-term care for individuals with ALS, that ease caregiver burden.

The funds will be available until June 30, 2026.

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“Our community has been energized by the Minnesota legislature rallying behind this law with bipartisan support,” Jennifer Hjelle, CEO of the ALS Association‘s Minnesota/North Dakota/South Dakota chapter, said in a press release.

“This funding offers some of the strongest research facilities the resources to take ALS research to the next level,” Hjelle added.

The original bill (HF 3603) was authored by Sen. David Tomassoni, who was diagnosed with ALS last year. Also involved in moving the legislation forward was Rep. Dave Lislegard.

The initiative was met with broad bipartisan support, passing in the state’s house of representatives with a vote of 121–9, and with unanimous approval in the senate. Among the legislation’s supporters was house Rep. Anne Neu Brindley, whose husband died from ALS in 2016.

The bill was signed into law by Gov. Tim Walz on March 30.

“Today our state is making real progress in the fight against ALS,” Walz said in another press release on the day of the signing.

“I’m proud to join Senator David Tomassoni, a bipartisan group of legislators, and advocates who have worked tirelessly to pass this bill for Minnesotans living with ALS and their caregivers. By investing in ALS research and caregiver support, we are moving together toward finding a cure for this disease and better caring for Minnesotans living with ALS and their families,” Walz added.

According to the ALS Association the funding which it hopes will spur progress toward a cure, will be the largest ALS funding source ever coming from a single state.

“We thank Senator David Tomassoni, Governor Tim Walz, and the entire Minnesota Legislature for rallying to the cause of the ALS community,” said Calaneet Balas, president and CEO of the ALS Association.

“We are especially grateful to Senator Tomassoni for his courage and commitment to secure the largest single state grant ever enacted to fund ALS research and caregiving. This unprecedented state support shows clearly that all Minnesotans recognize the great need for funding to make ALS livable until we can cure it,” added Balas.

Tomassoni recently announced he will retire from state legislature at the end of his term in 2024.