NEED FOR A CURE. Tom Guelzow, an Eau Claire trial attorney, experienced Amyotrophic Lateral Sclerosis (ALS) up-close and personal when both his brother Bob and sister Midge were also diagnosed with the disease. A family photo of the Guelzows, from left to right: Tom, Midge, Ron, their dad – Ronald Guelzow – and Bob, in front. (Submitted photo)

Eau Claire trial attorney, Thomas "Tom" Guelzow, is no stranger to unexpected tragedies in people’s lives. For over five decades, the lawyer has taken a stand for clients before judges and juries in courtrooms across the United States.

Once a judgment was rendered – win or lose – the lawsuit was done. The files were tucked away and secured in the drawer of a filing cabinet. Case closed. Move on to the next.

The same methods were how Tom chose to process unexpected tragedies in his own life, along with a huge dose of Lutheran faith, which he says he got from his mother, Laverne.

In October 1940, she married Ronald Guelzow, a master carpenter. He built their home in Windsor, Wisc., where they raised three children: Marjorie, nicknamed “Midge”; Robert, “Bob”; and Thomas, “Tom.”

During Laverne’s lifetime, 7 of her 10 siblings would experience and die from Amyotrophic Lateral Sclerosis, known as ALS. An incurable neuromuscular disease, it robs the ability to walk, talk and, eventually, breathe.

May is National ALS Awareness Month. The month is dedicated to raising awareness about the disease and the need for a cure. Approximately 5,000 to 6,400 people in the United States are diagnosed with ALS each year, which averages to about 15 new diagnoses per day.

It’s a fatal neurodegenerative disease that causes progressive muscle weakness, paralysis and respiratory failure by killing the motor neurons in the brain and spinal cord. Currently, there is no cure, although treatments can help manage symptoms.

Approximately 5,000 to 6,400 people in the United States are diagnosed with Amyotrophic Lateral Sclerosis (ALS) each year, which averages to about 15 new diagnoses per day.

Sadly, Laverne would pass away at age 63 in 1985 from Alzheimer’s, which is common in ALS-gene families. The ALS gene came from Laverne’s side of the family, Tom shared, although there were no formal diagnoses while his mom was growing up.

Tom and his entire immediate family experienced ALS up-close and personal when, 26 years apart, both his brother Bob and sister Midge were also diagnosed with ALS. They and their families would experience its profound impact.

“A silver lining of sorts is both Bob and Midge were organ donors,” Tom said. “Bob’s eyes were all that were able to be donated as ALS had ravaged his body. Midge’s liver and kidneys allowed two people to continue their life, and Don Harris, her second husband, who was her French Horn teacher later in life, has met them.”

For the past four years, Tom and his wife, Bambi, have generously donated to the Chippewa Valley’s Walk to Defeat ALS, typically held in June. This year’s walk will start at 8:30am on Saturday, June 6, in Carson Park (100 Carson Park Dr., Eau Claire).

For this year’s walk, Tom has formed “Team Bob & Midge” in memory of and to honor his brother and sister, with a fundraising goal of $12,000. With six weeks to go until the event, his team has already raised close to 60% of that goal.

“At prior walks, I met an angel named Carol Lendle, who lost her husband Dave to this insidious disease in 2023,” Tom shared in an interview at his home, seated in his favorite chair with Windsor, his beloved and devoted German Shepherd by his side. “Earlier this year, Carol sent me a video of Brian Wallach, a businessman and lawyer, who at age 37 was diagnosed with ALS.”

Brian Wallach, an American businessman and lawyer who worked on the first presidential campaign for Barack Obama and later in the White House general counsel’s office, was diagnosed with ALS in 2017.

When Wallach was diagnosed, he and his wife Sandra Abrevaya had just returned home with their second baby. They chose to fight; together, they founded a nonprofit called “I AM ALS,” a patient-created led organization representing the thousands of people living with ALS, their families and their caregivers.

“When I viewed that video, I saw my brother Bob and sister Midge and I knew I had to do more,” Tom said.

Large-scale genetic testing for ALS has been available since 1993, following the initial identification of an ALS causative gene – SOD1.

While initial testing focused on familial cases, advancements have since linked over 60 genes to the disease, making gene testing a valuable tool for identifying both familial and sporadic cases.

Chippewa Valley’s Walk to Defeat ALS will continue to play just one part in the continued advocacy for ALS awareness and the possibility for a cure, Tom said. The family’s goal: “Make ALS livable for everyone, everywhere, until we can cure it.”

“It will take all of us to get there.”

To join the forthcoming Chippewa Valley’s Walk to Defeat ALS in June at Carson Park (100 Carson Park Dr., Eau Claire) or donate to “Team Bob & Midge,” visit the fundraising webpage online. Learn more about the impacts of Amyotrophic Lateral Sclerosis online, via als.org.

Bob & Midge's diagnoses

Bob, Tom’s older brother

In the early 1980s, the phone rang at 2 in the morning at Wind Soar. Tom picked up. It was Bob. “I’ve got ALS,” he said. At first, Tom didn’t believe it. Yet, he called their dad in Windsor, and their sister in Madison. Tom immediately canceled everything on his calendar.

Tom headed to Madison to pick up his dad, and then to Fremont, Nebraska, where Bob lived, a single dad with three children. Bob’s wife had unexpectedly and tragically passed away, after a decade of marriage and three children, at age 31 in 1978 from a blood clot in the brain. When they arrived, Tom could see Bob near the tarmac, leaning against his car, with braces on his legs. It was true; his brother had ALS.

Bob moved to the Chippewa Valley, living in local nursing homes. His son, Scott, a 7th grader, came to live with Tom and Bambi. Bob's younger children, Karen and Kristin, went to live with Midge in Madison.

“Bob never complained, never asked 'why me,' ” Tom said. “As he declined, the way we communicated was a board with letters and numbers. Technology that is available today did not exist. It was cumbersome and challenging, and we did it, because we had to.”

Bob volunteered in 1966 to serve in the U.S. Army prior to the Vietnam War era's selective service draft lottery in 1969. He served in Army Intelligence in Turkey for four years, and in 1970, returned to DeForest and opened Bob’s TV Repair, which supported his wife and growing family. Due to his excellent work, Admiral TV recruited him to work for them in Fremont, Nebraska.

“I got a call on Good Friday, April 17, in 1987,” Tom recalled. “One of Bob’s lungs was collapsing. Through the board, Bob asked me what he should do. Ventilator or not.

“Bob had always been dead set against a ventilator, which would have enabled him to breathe and prolong his life. Through the board, I let him know I couldn’t decide for him. A few hours passed, and he formed the letters ‘suicide,’ ” he continued. “I was by his side when he passed away early Easter morning, April 19, at a nursing home in Chippewa Falls.”

Midge, Tom’s older sister

“Midge loved her peppermint schnapps cocktails,” Tom reminisced, sweetly laughing. “Whenever I was in Madison on business, we’d go out around 8pm after she was done with her appointments as a child psychologist. She was a tremendous advocate for children.

“She was petrified about getting ALS,” he continued. “So, one time in 2008, when I was visiting her and she was having difficulty scaling the ladder into the attic of their home, I teased her a bit, saying she needed to get to the gym. I feel bad about that in retrospect.

“Shortly thereafter, she, her husband Don and I were at University Hospitals, visiting with the same doctor my brother Bob had. Midge was defiant, sitting cross-legged on the examining table. When he told her she had ALS, she responded ‘I will beat this’. Afterwards, we all hugged and cried on a cold winter day on University Avenue.

“The last day I saw her alive, we both went to a malt shop,” he shared. “We both loved malts.”

In 2011, Midge fell on the steps of a parking lot near a church where she and her husband were attending a funeral service. She passed away from a cerebral hemorrhage.

“In a strange way, her quick death was a blessing,” Tom said. “While her legs had started to atrophy, she did not have to go through all the stages that my brother Bob had to go through, where he was left dying from suffocation,” he concluded.