Late Minn. Sen. David Tomassoni Chosen For ‘ALS Hero Award’

The late Minnesota Sen. David Tomassoni who died last year from ALS will be honored in a big way this week.

Tomassoni has been chosen for the ALS Hero Award presented by the ALS Association.

The Hero Award recognizes people living with, or who have lived with, ALS who have made a significant impact in the fight against the disease.

The award is the highest honor given by the ALS Association.

Tamassoni used his platform in the Minnesota State Legislature to secure two ALS bills worth $25 million in research and caregiver support.

The Hero Award will be presented Tuesday at noon.  Click here to read the nomination. Or see the text below.

Tomassoni was 69 years old.

The North Central Territory is nominating Senator David Tomassoni as an ALS Hero for the tremendous efforts he took while living with ALS to secure $25 million in ALS Research and caregiver funding as well as bring national media attention to this disease.

Senator Tomassoni served in the Minnesota State Legislature for 30 years. He proudly served the Iron Range, iron ore mining districts around Lake Superior, of Minnesota and promised to continue supporting them until the end. “That’s why I have fought for more resources for children’s mental health, for research into diseases, to make our water cleaner, for affordable health care for all, and support for our veterans suffering from the effects of their service. All noble causes. All the right things to do. When you called, I tried to be there.”-Mesabi Tribune

Senator Tomassoni was diagnosed with ALS on June 2, 2021. Shortly after his diagnosis, he reached out to the Care Services staff at The ALS Association in Minnesota to see how he could get engaged. Senator Tomassoni wanted to secure funds for research and caregiver assistance.

Since his diagnosis, Senator Tomassoni leveraged his platform as a member of the Minnesota State Senate to amplify the voices of those living with ALS and raise awareness of ALS. He tirelessly championed ALS research and care for Minnesotans living with ALS. In March 2022, in an effort led by Senator Tomassoni, the Minnesota Senate and the Minnesota House of Representatives passed legislation to provide $20 million in grants to ALS research and $5 million for ALS caregiver assistance. The legislation passed in the House by a wide margin and in the Senate with unanimous support.

After less than a month since introducing a $25 million bill, Senator Tomassoni joined a bipartisan group of legislators at the Capitol as Gov. Tim Walz signed the landmark legislation into law.

“I’m proud to join Sen. David Tomassoni, a bipartisan group of legislators and advocates who have worked tirelessly to pass this bill for Minnesotans living with ALS and their caregivers,” Walz said. “By investing in ALS research and caregiver support, we are moving together toward finding a cure for this disease and better caring for Minnesotans living with ALS and their families.” – MPR News

Senator Tomassoni was able to attend the signing of the bill and even though he was no longer able to speak, he was able to thank the governor, his colleagues, and those he cared for in his own words, using assistive technology.

“It started in my left hand, little things, I would drop a pen or straw. I didn’t think anything of it, just thought I wasn’t paying attention. Then it was loss of control of my emotions, crying in instances where I never would have cried in the past, like at the end of a chic flick or crying after the MN Wild won a hockey game after an incredible comeback. I am supposed to be a big, tough hockey player. I can’t be crying at a hockey game!

Slurring my words was next, then trouble turning down my shirt collar and buttoning my shirt. When I noticed that I had lost 10 pounds and it wasn’t coming off my belly and I couldn’t lift my 20-pound dumb bell, I finally decided to seek medical advice. After 2-1/2 months of doctor visits, an EMG revealed that I had ALS – that was June 2nd of 2021 which is not only the day Lou Gehrig died but also the day my dad died. Needless to say, I am not fond of June 2nd.

In September I was still driving, dressing myself and feeding myself; by January, I couldn’t do any of them. The legislative session began on January 31st. We introduced two bills – one for $20 million for research and one for the same $20 million plus $5 million for caregivers. It was amazing how things came together in the only legislature in the country that is divided – the Senate, controlled by republicans, and the House, controlled by democrats, we were able to pass both the $20 million for research and the $5 million for caregivers. $25 million for ALS, pretty amazing!

In my 30 years in the legislature, I don’t remember a bill spending that much money passing so early in the legislative session. The vote in the Senate was unanimous and there were only nine dissenting votes in the House of Representatives. Dr. David Walk, University of MN ALS researcher, called it a game changer.

Hopefully, this bill will encourage other states to do similar research. Hopefully, this brings hope and results to people afflicted with ALS. For far too long there has been little to no progress finding a cure. We have to mount an all-out research attack on this insidious disease. No one should have to suffer any longer from ALS.

There are so many people to thank – Governor Walz, Speaker Melissa Hortman, Senate Majority Leader Jeremy Miller, Senator Tom Bakk, Senator Karin Housley, Representative David Lislegard, Representative Anne Neu, Kent Hrbek, Terry Steinbach, David Kolquist, Chris Engler, Phil Griffin, ALS Association of MN and all of my colleagues in the MN Legislature. I am so grateful to all of them and to the people who developed the technology like the eye gaze computer which allows me to communicate. Without it I would not have been able to participate in the legislative session this year nor would I be here with you today.

Finally, I have to thank my caregivers – my sons Dante and Danny, their spouses Tiffany and Anna, my sister Mary Jo and husband, Richard and all the people who have been so generous with their time, prayers, flowers, money and cards. I am eternally grateful.

As Winston Churchill once said – never give up, never, never give up. That has to be our mantra.

Thank you all for your tireless advocacy for a noble cause and thank you for allowing me to speak to you today.” Senator Tomassoni after the ALS bill was signed, “This is about making the future better,” Tomassoni said. “We can all be proud of that. This is truly a good day.”-MPR News

Senator Tomassoni died on August 11th, 2022. He was a true hero of his constituents, the Iron Range, the state of Minnesota, and the ALS community. The North Central Territory would like to celebrate him posthumously for everything he did for ALS in such a short time. Senator Tomassoni’s tireless efforts in securing funding for the ALS bill will take ALS research to the next level, giving hope and impacting the lives of thousands of individuals and families living with ALS for many years to come.