EXPLAINER: Walz to sign ALS bill by senator battling disease |

ST. PAUL, Minn. (AP) — Gov. Tim Walz was expected to sign a $25 million bill Wednesday to fund ALS research, drafted by a veteran Iron Range senator who battles the neurological disease.

Senator David Tomassoni, 69, of Chisholm, took up the cause after revealing last year that he had ALS, also known as Lou Gehrig’s disease. His case progressed rapidly, requiring him to participate in most Senate business remotely this session.

Here’s a look at the bill, the illness, and Tomassoni’s fight against it.

DISEASE:

ALS stands for amyotrophic lateral sclerosis, although it is better known as Lou Gehrig’s disease, after the New York Yankees baseball player who died of it in 1941. It is a progressive disease that affects nerve cells in the brain and spinal cord.

There is no remedy, there is few treatment options, and most patients die within three to five years of diagnosis. This ultimately robs people of their ability to walk, talk, and ultimately breathe. At any given time, approximately 450 Minnesotans are living with the disease.

Another important victim was famous British physicist Stephen Hawking, passed away in 2018 after living with ALS for 55 years, which is very unusual.

THE SENATOR:

Tomassoni was a Democrat for most of his political career. He was elected to the House in 1992 and to the Senate in 2000. The Chisholm native also spent 16 years playing professional hockey in Italy and was part of the Italian national team for the 1984 Sarajevo Olympics.

But he went independent with fellow Iron Range Sen. Tom Bakk of Cook in 2020, breaking away from the liberal Democratic caucus to focus on economic interests in northern Minnesota, where voters have drifted away from the Democratic Party. GOP majority in the Senate temporarily appointed him President of the Senate in 2020, then president pro tempore for 2021.

Tomassoni was diagnosed last June and made public last July, claiming he felt the first effects of ALS during the 2021 legislative session. He recently said he could still drive, dress and feed himself in September, but could no longer do those things . Now dependent on a wheelchair to get around, he did not stand for election.

THE LEGISLATION:

The legislation provides $20 million to the Office of Higher Education to award competitive grants for research into the prevention, treatment, causes and cure of disease. Eligible applicants are research facilities, universities, and health systems located in Minnesota. Potential recipients include researchers from the University of Minnesota and the Mayo Clinic.

It also includes $5 million to help families care for ALS patients, including respite support for caregivers. The silver will be available until June 30, 2026.

The Senate passed the bill unanimously and it passed by a 121-9 vote in the House, where its supporters included GOP Deputy Minority Leader Anne Neu Brindley of North Branch, who lost her husband, Jon, to ALS in 2016.

The 25 million dollars is not much compared to the State Budget surplus of $9.25 billion. But the bill stands out as one of the first bipartisan successes of the 2022 session, in which the Democratic-controlled House and the GOP-led Senate found little common ground on what to do with the surplus. Walz is expected to sign the other big bipartisan hit soon, divest the state government of its investments in Russia to protest against his war in Ukraine.

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