At benefit in his honor, Sen. David Tomassoni debuts legislation to fight ALS

Less than a year after being stricken with an ALS diagnosis, state Sen. David Tomassoni chose a Tuesday fundraiser to fire an opening salvo in what he hoped would be a determined march toward a cure for hundreds of Minnesotans battling the disease.

The longtime Chisholm DFL legislator is helping lead two bills that would pump tens of millions of dollars toward research into the neurodegenerative disease while also aiding caregivers. He was joined by former pro athletes, medical experts and a bipartisan group of colleagues from the House and Senate — some of whom shared their own connection to the disease in wrenching detail.

"It's high time we make a huge investment in research and development to eradicate ALS," Tomassoni said in remarks read aloud by his son. "These two bills give us a fighting chance."

Tomassoni noted that he was diagnosed with ALS, also known as "Lou Gehrig's disease," last year on June 2 — the same date on which the New York Yankees legend died in 1941. He and other speakers used the connection to highlight how much progress has yet to be made in treating and preventing the disease in the decades since the death of its famous namesake.

The legislation would provide a one-time $20 million infusion to the University of Minnesota to award grants for ALS research. That would be on top of another $10 million proposed for a grant program offered through the Minnesota Department of Health.

The bills meanwhile would set up another $10 million grant program through the Department of Human Services to boost treatment of the disease and a separate $5 million program to support caregivers.

Both proposals will be heard in the Senate next week. But Tomassoni insisted that they be debuted Tuesday in St. Paul during an event in his honor. Former Sen. Dick Cohen and the Iron Range Delegation chose to shelve plans for the annual Ranger Party for a benefit to raise money to fight ALS.

Tomassoni got the last word at Tuesday's news conference: "When they said they were having a party for me, I said it has to be for ALS."

State Rep. Anne Neu Brindley, R-North Branch, lost her husband, Jon, to the disease in 2016. She held up a photo of her family after his diagnosis and wiped away tears as she described the importance of the care her family received before his death.

"The kind of service they provide to families is immeasurable," she said. "The things we don't know we need, they know we need."

Dr. David Walk, head of the neuromuscular division at the University of Minnesota, said that the legislative proposals could be "transformational." Scientific discoveries, he said, could pave the way for more clinical trials. He described "twin goals" in the fight ahead: "unlocking the biology of the disease and designing treatments to improve and extend the lives of people living with ALS in Minnesota and throughout the world."

Julie Najarian, whose husband, Paul, died because of ALS in 2014, further underscored the toll caring for a dying loved one can take. Joined by her children, Najarian described her experience watching her husband's motor functions disintegrate from an aggressive form of the disease and the family's struggle to lead a normal life. Pleased that he is now at peace, she said, the family now tries to follow the example he set in his battle with ALS.

Former NBA player Chris Engler and ex-MLB stars Kent Hrbek and Terry Steinbach also appeared in support of Tomassoni and the legislation. David Kolquist, president of Never Surrender, a charity that raises money to fight ALS, added that the bill's importance was also in its timing. He described advances in the past year in ALS trials that reduced the time to determine if certain drugs are effective treatments of the disease.

"We've got all of Target Field rented out," Steinbach added. "We'll have a farewell party for ALS."