ST. PAUL- When David Tomassoni was diagnosed with amyotrophic lateral sclerosis (ALS) last year, the state senator from Chisholm vowed to keep representing his district and to become an advocate for individuals and families affected by the disease.
Those two things came together in a poignant and powerful way on the Senate floor last week when his colleagues unanimously passed Tomassoni’s bill to provide $20 million to fund ALS research and $5 million for caregiver support programs and sent it on to the House, where action on the bill was anticipated as soon as this week.
Sen. Tom Bakk, of Cook, cast two votes for the bill. The first was his own, and the second was the 67th and final affirmative vote cast on behalf of his close friend and independent caucus colleague Tomassoni.
When the Senate Higher Education and Policy Committee took up the bill on March 8, Tomassoni addressed the committee remotely. He used a computerized augmentative communication device to deliver his comments.
“Lou Gehrig died of ALS in 1939. Little to no progress in finding a cure has been made since,” Tomassoni said. “This bill is a concerted effort to find a cure for ALS. ALS is a neurological disease that saps the strength from muscles and ultimately leaves chaos in its wake. In September, I was still driving and able to dress and feed myself. Today, I can’t do any of them. The disease progresses differently in different people. 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.”
With Tomassoni continuing his legislative work from a distance due to his current physical limitations, Bakk formally introduced the legislation in committee and again to the Senate as a whole. Bakk described the need for the bill and the impact it could have here and well beyond Minnesota.
“Very little research has been done on (ALS) because it doesn’t affect a large cohort of people,” Bakk said. “In Minnesota it afflicts about 450 people, and that’s been a constant number for a long time. Two people get diagnosed every week and two people die every week. There are different degrees of progression. Some are extremely fast, and for others, people somehow are able to live a number of years with it and we don’t know why. Because we haven’t spent the money to learn more about it. It could be very curable.”
“Wouldn’t it be something to be proud of if Minnesota was the place that was able to change the health of the world for all of the future people who are going to be diagnosed with ALS,” Bakk continued. “In all the bills I’ve carried over all the years, I don’t think I’ve ever carried one that was more about hope.”
The caregiver support portion of the legislation originated with a separate bill drafted by Sen. Karin Housley, R-Stillwater, and was incorporated into Tomassoni’s measure. Bakk referenced a press conference held to introduce the ALS bill when describing what the volunteer caregiver training and respite care it would provide would help to address.
“If you had watched the press conference and saw those families talk about what they had to go through trying to care for somebody with a debilitating disease like ALS, most spouses have to quit their jobs because the care is so intense. There is just no way a family can have any kind of a normal life,” Bakk said.
The Senate suspended its rules so that the bill could be acted upon more quickly than normal. For nearly an hour, with Tomassoni watching from home, senator after senator rose to speak in support of the bill, to share stories illustrating their respect for Tomassoni, and to express praise and gratitude for his commitment to champion such a cause.
Senate President David Osmek, R-Mound, said, “It’s not going to just affect Minnesotans. It may not necessarily find a cure, but this is going to impact the world. If we can make progress with this terrible disease, this is going to help people not just in Minnesota, not just inside the United States – and that IS David Tomassoni.”
Charles Wiger, DFL-Maplewood, called Tomassoni “a decent, hardworking senator who cares about people and who has a legacy now of fighting the war on ALS.”
Bakk rose again during the comment period to reinforce that voting for the bill was about more than recognizing the legacy of a cherished colleague.
“What does this vote mean? This isn’t a vote for Sen.Tomassoni,” Bakk said. “This is a vote for people we don’t know. It’s a vote for Sen. Tomassoni’s vision and the courage of what he’s going through, and his number one priority right now in his life is to help others. That’s a pretty remarkable legacy.”
Republican Majority Leader Jeremy Miller wrapped up the remarks.
“This is a big deal,” he said. “Sen. Tomassoni, thank you for giving us the opportunity to help you help make a difference in the lives of so many families across our state, across the nation, and across the world who are dealing with ALS. Sen. Tomassoni, this one’s for you.”
Following the unanimous vote, Senate members rose to their feet in a 45-second standing ovation in honor of Tomassoni and the passage of the bill.
An unusual aspect of the bill is that the funding has been allocated through 2026, a period of time that Bakk said will prevent a rush to get the money spent and instead encourage thoughtful, collaborative research proposals that can have greater impact.
“We don’t do that often here,” Bakk said. “We’re going to try to craft this so people aren’t working in silos in the research, that they’re working collectively together and we create some synergy among all our best minds in Minnesota.”
Rep. Dave Lislegard, DFL-Aurora, is the chief author and sponsor of the bill in the Minnesota House, which has assigned it to the Higher Education Finance and Policy committee. Reps. Julie Sandstede, DFL-Hibbing, and Rob Ecklund, DFL-International Falls, are among the co-authors.