Longboat Key residents to walk to cure ALS

Bob Simmons is known as a leader on Longboat Key. He's been on the board of every association he’s been involved with. He’s a founding member of the Longboat Key Foundation, and he and wife Teresa started a food pantry at a local elementary school. 

So when Bob started losing his voice due to ALS, it didn’t stop him from having one or carrying on as a leader. Bob and Teresa are currently focused on finding a cure for ALS, familiarly known as Lou Gehrig’s disease. The initials stand for Amyotrophic Lateral Sclerosis, which is a neurodegenerative disease. Bob was diagnosed in December. 

“There are so few people diagnosed, it takes a long time. It’s a process of elimination because they want to make sure that they don’t misdiagnose you. It took us over a year,” Teresa said. “Bob’s symptoms started in the winter of 2021 and it took us all of 2022 to chase down what it was. We were looking at everything except neurological. And then, one of Bob’s doctor friends got him into the hospital for extensive testing.”

ALS attacks the nerve cells in the brain and spinal cord that control muscle movement. Symptoms present in two forms, limb or bulbar onset, which either affect walking or talking first. 

In Bob’s case, and 30% of ALS patients, the disease struck his speech first. He's learning how to use EyeGaze, which Teresa described as being like an iPad. Bob types, and the device speaks.

For now, when Teresa starts gushing too much about what a wonderful man he is, Bob simply waves one hand in front of his neck to give her the universal sign to cut it out already. 

He also still drives over to the tennis courts three times a week to organize the Ruff Men’s Tennis Group at the Longboat Key Club. Bob doesn't play anymore, but Teresa helps him set up and they stay to watch. 

On April 15, the couple will be leading a new team, the Simmons Sole Mates, at the Walk to Defeat ALS at Payne Park in Sarasota. They’re asking all friends and neighbors to join them.

Donations aren't required, but the 16-member team is racking them up. As of March 29, the Sarasota chapter of the ALS Association had raised $55,381 total. The Simmons Sole Mates had raised $21,515, nearly matching the pre-walk fundraising efforts in their first year. 

ALS is terminal and statistically considered a rare disease with about 5,000 diagnoses per year. After diagnosis, life expectancy is from two to five years. 

“We want to generate awareness and get the word out,” Teresa said. “If we can cure AIDS and HIV, and it’s not a death sentence anymore, I want the same for ALS. I want that hope.”

“It’s not about me,” Bob interjected, “It’s about ALS.”