Minnesota Legislator Seeks to Fund ALS Research, Help Caregivers

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by Mary Chapman |

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Minnesota lawmaker Dave Lislegard has introduced two measures in the state’s legislature that would invest tens of millions of dollars in amyotrophic lateral sclerosis (ALS) research and caregiver support.

The first bill, HF 3603, would appropriate $20 million to the University of Minnesota for competitive research grants to find better ways to prevent, treat, and hopefully cure the progressive neurodegenerative disorder, as well as to learn more about what causes it.

HF 3604, the second bill, would invest $10 million in each of two grant programs within the Minnesota Department of Health.

One grant would support ALS research in areas including disease mechanisms and models, possible environmental factors, biomarkers, and treatment development. The funds also would advance clinical trials, precision medicine, medical devices and assistive technology, and research into cognition. The second grant program would focus on supporting, improving, and expanding ALS treatment.

In addition, the second bill would invest $5 million toward the establishment of ALS support programs that would be managed by the Minnesota Board on Aging, which works to ensure that older residents in the state, and their families, are served effectively by state and local policies and programs. The new programs would provide information, education, and training to respite and volunteer caregivers to help them better care for and manage ALS patients, and to cope with the stress that often accompanies such care.

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“ALS is a horrible disease that affects people in unimaginable ways, and it’s hard not to see this issue through a personal lens when you witness up close the devastating impact it has,” Lislegard, a state representative, said in a press release.

“I frankly knew very little about ALS until a dear friend was diagnosed with it. ALS is a cruel disease. It’s unfathomable what it does to people afflicted, and it’s heart-wrenching to see what family members and caregivers have to go through as they help loved ones navigate the condition,” added Lislegard. “Minnesota has long been a leader in healthcare innovation, and I’m hopeful the investments we’re putting forth in these bills will make a big difference to improve the lives of people living with ALS and get us closer to a cure.”

A Minnesota state senator, David Tomassoni, was recently diagnosed with ALS and has announced he will retire from the legislature at the end of his current term.

ALS, also known as Lou Gehrig’s disease, affects up to 30,000 individuals in the U.S., and about 5,000 new cases are diagnosed each year.