November 23, 2024
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Elburn resident helps to fund ALS research

Les Turner Foundation walks toward a cure for ALS, foundation raises $33 million for research

By Hannah Soukup
The Les Turner ALS Foundation's 2024 Walk for Life took place on Sept. 14, at Soldier Field in Chicago. The charity event raised more than $570,000 for ALS research.

The Les Turner ALS Foundation's 2024 Walk for Life took place on Sept. 14, at Soldier Field in Chicago. The charity event raised more than $570,000 for ALS research. (Photo provided by the Les Turner ALS Foundation)

In the Chicago area and beyond, the Les Turner ALS Foundation has become a lifeline for those living with ALS. Local residents find not just assistance, but also camaraderie through the foundation’s events, clinical trials and support services.

The foundation, established in 1979, provides support to over 300 individuals and has raised about $33 million for ALS research and support.

Hoffman Estates resident Mario Hernandez, 54, in his wheelchair surrounded by family and friends. Hernandez was diagnosed with ALS four years ago and is involved in the Les Turner ALS Foundation.

Hoffman Estates resident Mario Hernandez, 54, in his wheelchair surrounded by family and friends. Hernandez was diagnosed with ALS four years ago and is involved in the Les Turner ALS Foundation. (Photo provided by the Les Turner ALS Foundation)

Each individual with ALS, short for, amyotrophic lateral sclerosis, may experience different symptoms. There is sporadic and genetic ALS, said Elburn resident Janie Gobeli, who was diagnosed with sporadic ALS in 2021.

“It kind of depends on the day and my strength, but once I have to be transferred, I can stand for maybe a minute, if that, and then I get out of breath, and my legs give out,” Gobeli said. “It also started in my right hand, but my right hand is really, really weak. I have no strength at all, but I’m able to use my right hand to power my wheelchair.”

Gobeli is involved in the Les Turner Foundation, specifically attending their events, participating in their clinical trials and using their support groups and services. Gobeli attended the 2023 and 2024 Walk for Life, which took place at Soldier Field in Chicago.

“I love it,” Gobeli said. “Last year was my first year experiencing it, and I was like ‘I’m going to arrange a team and all that.’ Very graciously I had a huge team last year, and everybody was like, ‘we want to join you and support you.’ [There were] lots of donations and things like that.”

The walk raised more than $570,000 to support those suffering from ALS and their families, according to a news release from the foundation.

“We serve people directly in Chicago and Illinois, but we have people who participate in our Support Services groups from all over the country because they have heard of the support that we provide,” said Laura Freveletti, the foundation’s CEO of just under two years. “Our educational materials that are online are all free.”

“We provide people with important information from the time they are diagnosed, through their journey, because there are just so many things that people have to consider with this disease,” Freveletti said.

Jackie Szymczak, Bryan Szymczak and Laura Freveletti (from left to right in the center) stand with members of the Huntley Firefighters Local 4106, along with Fire Chief Scott Ravagnie and members staff of the Huntley Fire Protection District. The district donated $40,000 to the Les Turner ALS Foundation.

Jackie Szymczak, Bryan Szymczak and Laura Freveletti (from left to right in the center) stand with members of the Huntley Firefighters Local 4106, along with Fire Chief Scott Ravagnie and members staff of the Huntley Fire Protection District. The district donated $40,000 to the Les Turner ALS Foundation. (Photo provided by the Les Turner ALS Foundation)

Bryan Szymczak, 47, a former firefighter lieutenant uses Les Turner’s support systems and clinical trials. The Huntley resident was diagnosed with ALS in 2023. He is trying to make ALS considered a presumptive disease for firefighters so those diagnosed can receive full retirement benefits.

“The state union approved the motion to go forward with it to take it to and in Springfield,” Szymczak said. “So now, it’s really just trying to get the information to show legislators that you know, the stress and toxins could put firemen at risk for ALS. I’m trying to do what I can to help the next guy who gets it.”

Hoffman Estates resident Mario Hernanez, 54, was diagnosed with ALS four years ago and is also involved in the foundation’s Service Committee Board and support groups. The foundation has a variety of tools through the website, along with financial help in getting ALS resources, Hernandez said, along with his daughter Jenny Hernandez.

“We’re there for each other,” Hernandez said, with the help of his daughter. “We get gifts, and we get to share [experiences] and support others. They’re [Les Turner] really good about providing so much – so many events, so many resources, so many tools for us, that it makes this diagnosis just a little bit easier to go through.”

The foundation has a variety of upcoming events:

  • Les Turner Symposium on ALS at 8 a.m. Monday, Nov. 4, at Northwestern Memorial Hospital in Chicago.
  • All in for ALS, Young Professional Group’s Casino Night at 6 p.m. Saturday, Nov. 23, at East Bank Club in Chicago.
  • Hope Through Caring Gala at 6 p.m. Saturday, April 5, 2025, at Blue Aqua Radisson Hotel in Chicago.

For more information on the foundation, visit lesturnerals.org.

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