Sen. David Tomassoni won't battle ALS alone

This is not a feel-good story.

Any story about ALS — the progressive neurodegenerative disease that steals the body's ability to move, to speak, to breathe — is going to be more heartbreaking than heartwarming.

But state Sen. David Tomassoni has the hearts of his colleagues and constituents. They're rallying around him and the work he still hopes to do.

If Tomassoni has to fight amyotrophic lateral sclerosis — Lou Gehrig's disease — he won't have to fight it alone.

"In September, I was still driving and able to dress and feed myself. Today, I can't do any of them," Tomassoni's computer-generated voice rang out in a Senate hearing room this week.

What he can do, during his final term at the Legislature, is the work that matters to him most.

Tomassoni — a DFLer-turned-Independent from Chisholm — is chief author of dozens of bills this year. Most of them aimed at improving life in the Iron Range communities he has served for the past three decades. Funds for the Boys and Girls Club in Hibbing. Road and sewer infrastructure in Virginia. A new stretch of the Mesabi Trail. Capital improvements to the Chisholm Curling Club.

He's also leveraging three decades of political clout against the disease that has stolen too many of Minnesota's favorite Minnesotans.

When his colleagues organized a benefit in his honor last week, Tomassoni turned it into an ALS fundraiser. The governor was there. The previous governor was there. Several lawmakers who hope to be the next governor were there. For one moment, political labels were less important than the people behind them.

Tomassoni used the moment to introduce two new bills: one that would increase funds for ALS research and one that would increase help for ALS caregivers.

On Tuesday, the Senate Higher Education Finance and Policy Committee took up his plan to steer $20 million worth of state grants to ALS research. Maybe it would be enough to coax another medical miracle out of the state that gave the world pioneering open heart surgery and pacemakers.

"Minnesotans invented water skis. Rollerblades. Post-it notes and sandpaper," Sen. Tom Bakk — Tomassoni's friend and fellow Iron Range Independent — testified Tuesday.

"Wouldn't it be amazing if Minnesota became a place where we found a cure for this disease?" Bakk added. "Wouldn't we all be proud?"

For a disease that was identified 150 years ago, we know frighteningly little about ALS.

We don't have a cause. We don't have a cure. We don't know why it's twice as likely to strike veterans.

We don't understand what's happening in Granite Falls, a city of 3,000 on the western Minnesota prairie, where ALS case rates defy the laws of probability.

There are about 450 Minnesotans living with ALS today. Five of them live in Granite Falls.

"I am very fortunate to have a slow-progressing form of ALS, which as you can hear, affects my speech, so please be patient with me," said Granite Falls Mayor Dave Smiglewski, one of the five, speaking slowly but clearly during his remote testimony.

A decade ago, Smiglewski lost a good friend, state Sen. Gary Kubly, DFL-Granite Falls, to ALS. Today, despite his own diagnosis, he's helping to care for another friend who has been incapacitated by the disease.

ALS kills about two Minnesotans every week. Every week, two new Minnesotans are diagnosed.

The hearing drew lawmakers, researchers and celebrities. Retired pro basketball player Chris Engler, who was diagnosed with ALS two years ago, testified in favor of the bill. So did legendary Twins first baseman Kent Hrbek, who lost his father to ALS in 1982.

What they want is the first thing ALS steals away. Hope.

"This bill is a concerted effort to find a cure for ALS," Tomassoni said. "It may not happen in my lifetime. But the future needs to be full of hope that the next generations will be ALS free."

This is not a feel-good story. But maybe it will be something better. A story about doing good.

"I have learned here in my time," Bakk said, that "the things that feel best … are when you do something for someone you don't know. That's what this is. Sen. Tomassoni is proposing to help people he doesn't know."

As his bill sailed through his committee and moved on to Senate finance, Tomassoni had the last word.

"Thank you," he said. "Thank you."