SAINT PAUL, Minn. – Today, with a broad, bipartisan vote, the Minnesota House approved a strong package of investments in amyotrophic lateral sclerosis (ALS) research, as well as caregiver support and respite services grants. Rep. Dave Lislegard (DFL – Aurora), chief author in the House, developed the bill with Sen. David Tomassoni (I – Chisholm), the Senate’s chief author who is currently living with ALS.
“We work on a lot of meaningful legislation at the Capitol, but this bill has personal meaning. It’s heartbreaking to witness how ALS not only impacts the person afflicted by the condition, but how it also affects family members and loved ones who step up to offer care,” Rep. Lislegard said. “I’m touched and honored the Minnesota House passed this bill today with a sweeping, bipartisan majority not just for our friend David, but for everyone else who has been impacted by this horrible disease. Despite his condition, Sen. Tomassoni is still advocating hard to push this legislation over the finish line knowing that while it won’t help him, it has a tremendous potential to help others. We owe it to David and everyone else living with ALS to do everything in our power to push for a cure, and I’m confident this investment will make a big difference in people’s lives.”
Also known as Lou Gehrig’s disease, ALS is a neurodegenerative disease that results in progressive loss of motor control of voluntary muscles affecting approximately 30,000 Americans, with about 5,000 new cases diagnosed every year. At any one time, there are an average of 450 Minnesotans living with ALS. It’s 100% fatal and there is no known cure.
The legislation invests $20 million to the Office of Higher Education to – with the support of the Minnesota Department of Health – award grants to conduct clinical and translational research into the prevention, treatment, causes, and cures of ALS. Research facilities, universities, or health systems located in Minnesota are all eligible to apply.
The bill also invests $5 million for caregiver support programs – administered by the Minnesota Board on Aging – for families of people with ALS including services, information, education, and training to respite caregivers and volunteers about caring for, managing, and coping with care.
The Senate unanimously passed the bill earlier this month. Following adoption of a clarifying amendment on the House Floor, the bill goes back to the Senate for repassage, after which it will go to Governor Walz for his signature.
As discussion wound down on the House Floor approaching a vote, Rep. Lislegard lifted an empty wine glass in the air and offered a greeting to his longtime friend, Sen. Tomassoni.
“Salute. I love you!”