Minnesota spends $25 million on ALS research, caregiving

Sen. Tom Bakk walked into his fellow Iron Ranger's office one morning last June and asked what he found out during a doctor's visit.

"I've got ALS," Sen. David Tomassoni eventually replied, and when pressed for the prognosis said, "Tom, they told me there is nothing they can do."

On Wednesday, Tomassoni sat in a wheelchair surrounded by his sons, legislators and advocates as Gov. Tim Walz signed a bill into law that will fund amyotrophic lateral sclerosis (ALS) research and support caregivers.

"My hope, and I know David's hope for the bill is that someday, somebody's friend or family member is going to be able to come home after a diagnosis and say, 'There is something they might be able to do,' " Bakk said, his voice breaking as he stood next to Tomassoni amid a bipartisan crowd.

Minnesota will give $20 million in grants to researchers trying to find a cure or improve the lives of those with ALS, also known as Lou Gehrig's disease.

"This bill means hope," the Democrat from Chisholm said with the aid of a speech-generating device. "Imagine a researcher like [University of Minnesota neurologist] Dr. David Walk finally having the research dollars necessary to make a unprecedented effort toward finding the cure."

The measure also includes $5 million aimed at caregivers, who Tomassoni said do a "24-hour job."

Tomassoni has continued to serve in the Legislature since he was diagnosed with ALS, sponsoring dozens of bills over the past few months, from a measure to help fund Mesabi Trail construction to a $100 million pandemic relief grant proposal for businesses. But it was his ALS legislation that quickly drew support from both sides of the aisle, racing through the legislative process to the governor's desk.

"Your difficult lived experience in this is translating into improving the lives of others," Walz said, thanking those who pushed for the funding.

ALS affects the nerve cells that control voluntary muscle movement, causing the cells to deteriorate and die. About 5,000 people are diagnosed every year with it, according to the Centers for Disease Control and Prevention.

Universities, research facilities and health systems in Minnesota will be able to apply for a portion of the $20 million through a competitive grant program. They can use it for a variety of ALS-related research, including drug development, medical devices and cognitive studies.

The research dollars and the $5 million for caregivers are one-time money. The caregiver dollars will help provide home health support for families, said Rep. Anne Neu Brindley, R-North Branch, who lost her husband to ALS.

In 2014, the ALS Ice Bucket Challenge brought in $115 million nationwide, said Jennifer Hjelle, the executive director of a local chapter of the ALS Association. That was a shot in the arm for research, she said, and researchers have since identified five new genes associated with ALS and have more drugs in the pipeline than ever before.

"So the $20 million is really going to continue that momentum," Hjelle said.