In the Chicago area and surrounding areas, the Les Turner ALS Foundation is a lifeline for people living with ALS. Local residents feel not only support but also friendship through the Foundation’s events, clinical trials, and support services.
Founded in 1979, the foundation has provided support to more than 300 individuals and raised approximately $33 million for ALS research and support.
People with ALS, short for amyotrophic lateral sclerosis, can experience different symptoms. “There’s sporadic ALS and hereditary ALS,” said Janie Goberi, an Elburn resident who was diagnosed with sporadic ALS in 2021.
“Depending on the day and my physical fitness, if I have to transfer, I might be able to stand for about a minute, but then I’m out of breath and my legs are tired,” Gobeli said. Ta. “It started with my right hand, and my right hand is really, really weak. I have no strength at all, but I can use my right hand to move the wheelchair.”
Goberi is involved with the Les Turner Foundation, particularly by attending events, participating in clinical trials, and using support groups and services. Goberi participated in the 2023 and 2024 Walk for Life at Chicago’s Soldier Field.
“I love it,” Goberi said. “Last year was the first year that I went through it, so I was like, ‘We’re going to get a team and stuff like that.’ Very thankfully, last year I had a big team and everybody was like, ‘We’re going to get you a team. I want to join you and support you.” (There were many donations etc.)
The walk raised more than $570,000 to support people affected by ALS and their families, according to a news release from the foundation.
“While we serve people directly in Chicago and Illinois, we have people from all over the country who join our support services group because they know the support we provide. people,” said Laura Freveretti, who has been the foundation’s CEO for just under two years. . “All of our online materials are free.”
“There are so many things to consider with this disease that we are providing people with important information from the time of diagnosis all the way through to treatment,” Freveretti said.
Brian Szymczak, 47, a retired firefighter lieutenant, uses Les Turner’s support systems and clinical trials. The Huntley resident was diagnosed with ALS in 2023. He wants ALS to be considered a presumptive disease for firefighters, allowing those diagnosed to receive full retirement benefits.
“The state union approved a motion to move forward with the move to Springfield and move forward in Springfield,” Simchak said. “So now we’re just trying to get information to show legislators that stress and toxins can put firefighters at risk for ALS. We’ll do everything we can to help the next person who gets infected.” I’m trying to do that.”
Mario Hernanes, 54, a resident of Hoffman Estates, was diagnosed with ALS four years ago and serves on the foundation’s service committee board and support groups. Hernandez and his daughter, Jenny Hernandez, said the foundation offers a variety of tools through its website, as well as financial assistance to obtain ALS resources.
“We’re there for each other,” Hernandez said with the help of her daughter. “We can receive gifts and share (experiences) to support others. They (Les Turner) have given us so many events, so many resources, It gives us so many tools that it makes this diagnosis a little bit easier.”
The foundation is planning various events in the future.
Les Turner Symposium on ALS, 8 a.m. Monday, Nov. 4, at Northwestern Memorial Hospital in Chicago. All In for ALS, Young Professional Group Casino Night, Saturday, November 23rd at 6pm at East Bank Club in Chicago. Hope through care. The Gala will be held on Saturday, April 5, 2025 at 6:00 PM at the Blue Aqua Radisson Hotel in Chicago.
For more information about the foundation, visit lesturnerals.org.
