ST. PAUL- Today a broad coalition of legislators, health care professionals, and advocates joined together to raise awareness about an effort at the legislature to support Minnesotans dealing with Amyotrophic Lateral Sclerosis (ALS). The disease is commonly referred to as Lou Gehrig’s disease after the Hall of Fame baseball player who died of ALS. The two bills, SF3310/HF3604 and SF3372/HF3603, have been introduced with bipartisan and bicameral support. The effort is led by Senator David Tomassoni (DFL-Chisholm) who was diagnosed with ALS last year.
“Lou Gehrig died June 2, 1939. Incidentally, my father died on June 2nd, and I was diagnosed on June 2nd,” Tomassoni said. “Since Lou Gehrig’s death, more than eighty years have passed with little or no progress towards finding a cure for this horrible disease. It’s high time we make a huge investment in research and development to eradicate ALS. These two bills give us a fighting chance. The first bill invests in research, caregiver assistance, and funding ALS clinics. The second bill is research only. Either way, we need to make significant strides in the fight against ALS. I look forward to working with my legislative colleagues and the Governor to get these bills over the finish line. I want to thank everyone supporting our efforts and I look forward to passing this legislation early on in the legislative session.”
“Following my friend Senator Tomassoni’s diagnosis, I’ve learned a great deal about how cruel and debilitating ALS is for those who contract the condition. It also poses daunting challenges for loved ones and caregivers who join them on their journey,” said Rep. Dave Lislegard (DFL – Aurora), chief author of the legislation in the Minnesota House. “With the new investments in these bills, we have an incredible opportunity to make groundbreaking progress in both research and support. We can help improve people’s lives and hopefully move us closer to a cure for this devastating disease.”
SF3310/HF3604 includes a $10 million annual ALS research grant program; a $10 million annual ALS services grant program to support, improve, and expand the treatment of ALS; and a $5 million annual grant program to support family caregivers of individuals with ALS. The second bill SF3372/HF3603 gives $20 million to the University of Minnesota to award competitive grants to conduct research into the prevention, treatment, causes, and cures of amyotrophic lateral sclerosis (ALS). The funding would create a Center for ALS Research at the University and expand current clinical research into ALS.
“These bills would dramatically increase care and support for the ALS community while making significant strides in critical research needed for treatments and, ultimately, a cure,” said Marianne Keuhn, Vice President, Care Services, The ALS Association MN/ND/SD Chapter.
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord and there is no known cure. It ultimately robs people of their ability to walk, talk, and eventually breathe. At any given time roughly 450 Minnesotans are living with the disease with the average lifespan of someone diagnosed being two to five years.
There are six clinics in Minnesota that are currently working on ALS research: Essentia Health (Duluth), HealthPartners (St. Paul), Hennepin Healthcare (Minneapolis), Mayo Clinic (Rochester), the University of Minnesota (Minneapolis), and the VA Medical Center (Minneapolis).
The bills now await committee action. SF3372 is due to be heard in the Senate Higher Education Finance & Policy Committee on Tuesday, March 8th.