SAINT PAUL, Minn. – Monday, state Rep. Dave Lislegard (DFL – Aurora) introduced legislation investing in amyotrophic lateral sclerosis (ALS) research, as well as caregiver support and respite services grants.
“ALS is a horrible disease that affects people in unimaginable ways, and it’s hard to not see this issue through a personal lens when you witness up close the devastating impact it has,” Rep. Lislegard said. “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. Minnesota has long been a leader in health care 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.”
ALS, also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease affecting as many as 30,000 people each year in the United States with approximately 5,000 new cases diagnosed each year. There is no known cure.
The first bill, HF 3603, would appropriate $20 million to the University of Minnesota for competitive grants to conduct research into the prevention, treatment, causes, and cures of ALS. The second bill, HF 3604, would create a pair of grant programs within the Minnesota Department of Health. One would fund $10 million in research related to ALS on topics including environmental factors, disease mechanisms, disease models, biomarkers, drug development, clinical studies, precision medicine, medical devices, assistive technology, and cognitive studies. The other grant program would invest $10 million in grants to support, improve, and expand the treatment of ALS.
Lastly, the bill creates ALS caregiver support programs managed by the Minnesota Board on Aging. The programs will provide support including information, education, and training to respite caregivers and volunteers about caring for, managing, and coping with care for a person with ALS. The bill invests $5 million toward this initiative.
Sen. David Tomassoni (I – Chisholm), chief author of legislation in the Senate, recently announced his decision to retire from the Legislature after the current two-year term following his own ALS diagnosis.