The About Les’ Spirit Team led by Highland Park resident Bonny Gaffen; founder of the Les Turner ALS Foundation and sister-in-law of Les Turner.
When Highland Park resident Wendy Abrams started volunteering for the Les Turner ALS Foundation 40 years ago, very few people knew about ALS (amyotrophic lateral sclerosis), which was referred to as Lou Gehrig’s Disease after the New York Yankees legend, who was diagnosed in the 1930s.
Today, every 90 minutes someone in the United States is diagnosed with ALS, and every 90 minutes someone dies of it.
Abrams served as the executive director of the Les Turner ALS Foundation for 36 years before she retired in 2015. ALS patients’ muscles atrophy, so they lose the use of their limbs or are unable to speak and swallow, but this usually doesn’t affect the brain. “So you’re very aware of what’s happening, but you can’t do anything about it,” she said.
Despite this debilitating disease, many ALS patients remain optimistic.
“The people who get this disease are remarkable,” said Abrams. “They’re very strong mentally and are good-humored, because that’s one of the few things that gets you through a difficult situation like this. I’ve become friends with so many over the years and I have such deep respect for what they go through.”
Abrams will lead the team “Lester’s Legacy: 40 Years Strong,” in honor of the organization’s 40th anniversary at the ALS Walk for Life at Soldier Field in Chicago. The event will feature a two-mile course that winds along Chicago’s lakefront and through Solider Field on September 16.
“Lester’s Legacy: 40 Years Strong,” will comprise some of the founders, early board members and early staff members, and Soldier Field will be filled with ALS family members and patients. There are usually about 40 patients that come to the walk with their teams and a total of about 7,000 people.
“Our team recognizes the fact that we’re here for 40 years,” said Abrams. “While we haven’t found the answers we’re not going away. We’ve built a strong organization and we’re here until we find the answers.”
Les Turner’s former wife, their son and his two grandchildren that he never met will be at the ALS Walk. The Turners other son lives on the West Coast, and both men are in good health.
Abrams added that genetic testing for ALS is available.
ABC7 Chicago Meteorologists Phil Schwarz and Tracy Butler will serve as emcees. Schwarz’s grandfather and Butler’s uncle both suffered from ALS. Her uncle died a few years ago.
In 1977, Turner created the Foundation in his living room with his family and friends, as he was frustrated with the lack of resources for ALS patients.
Turner passed away in 1978, two years after he was diagnosed with ALS. He left behind his wife and little boys.
“He was 38-years-old and it was devastating,” said Abrams.
Today the median age for ALS is closer to 55, but there are many young people who have ALS. “Some patients are living longer, because scientists have figured out ways to improve breathing problems, which helps prevent respiratory failure,” said Abrams.
She added that there are two drugs that have been approved by the FDA, but they only moderately slow the disease. The cause of ALS is still a mystery.
In 1979, the foundation partnered with Northwestern Hospital to establish the first Les Turner ALS Research Laboratory.
Today the Les Turner ALS Research Patient Center has three research labs and a clinic that serves more than 400 patients a year at Northwestern Medicine.
Abrams described a unique service that the Les Turner ALS Foundation offers. The Home and Community Family Service Team has six health professionals, social workers and nurses who go into ALS patients’ homes on a regular basis to provide much needed help.
“The social workers have specific programs for children, and we also have grant programs to allow families to hire in outside caregivers to give their live-in caregivers some respite,” said Abrams. There are also grants to pay for equipment and for transportation to clinic visits.
Abrams is looking forward to the September 16 annual ALS Walk for Life at Soldier Field in Chicago. The grounds open at 9:30 a.m. and the opening ceremony will begin at 10:30 a.m.
The event will feature music, live entertainment, children’s activities and more. There’s no fee and people can register the day of, though pre-registration is recommended.
The Foundation has raised $67 million over the last 40 years and hopes to raise $1 million this weekend.
For more information visit: www.ALSwalkforlife.org.
More that 7,000 people are expected to turn out for the 2017 ALS Walk for Life; photos courtesy of the Les Turner ALS Foundation.