Hoffman Estates native fighting to find ALS cure

Dan Saunders was devastated a year ago to learn he had ALS, and he struggles daily to balance the gradual loss of his independence with a desire to live each remaining day to its fullest.

The 54-year-old Hoffman Estates native also is striving to help erase ALS as a death sentence for future generations.

That effort comes to his favorite local golf course, Hilldale Golf Club in Hoffman Estates, on Saturday, July 11, for the Putt Out ALS fundraiser. Proceeds will benefit the ALS Association Greater Chicago Chapter.

"It was really my golf buddies," Saunders said, singling out Dave Trunda of Algonquin for special honors. "They came up with the idea."

Saunders anticipates a bittersweet experience meeting up with old friends on the course where he played for 22 years, and that he lived next to while attending Hoffman Estates High School with his future wife, Ann.

Saying goodbye to golf was one of the hardest parts of his early months of living with ALS last year. But before he did, he celebrated his passion by visiting the revered St. Andrews golf course in Scotland.

Each ability he's lost - golfing, driving, walking - has brought him back to the initial horror of his July 2014 diagnosis.

"It didn't hit me until I started losing capabilities," Saunders said. "Falling on the golf course was really tough."

This is the second time the tragic disease has affected Saunders' family. His mother-in-law died from ALS six years ago, only two years after being diagnosed at age 80.

For Saunders, it began with muscle spasms in the fall of 2013. He at first thought those were side effects of a cholesterol-lowering medication he was taking. But even when he stopped taking the medication, the symptoms continued.

By March 2014, his left foot was dragging and not keeping up with the right. That began a nearly four-month process of diagnosing the problem. ALS is diagnosed not by a single test but by eliminating every one of several other possibilities first.

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The average life span after diagnosis is two to five years. Less than 10 percent of those affected live longer than 10 years.

As depicted in the 2014 film "The Theory of Everything," famous theoretical physicist Stephen Hawking has lived with ALS for more than half a century. But his example is so rare that virtually no one diagnosed with ALS hopes to mimic it, Saunders said.

Nevertheless, Saunders insists that the disease is not incurable, only underfunded. The reason treatment and a cure are still so far off is that even the cause of ALS has not yet been determined, he said.

Saunders first began raising money and awareness for the fight against ALS after his mother-in-law was diagnosed, and he's continued the effort since he learned he, too, was afflicted.

On May 30, Saunders' team, Dan's Determinators, was the top fundraiser at the ALS Association's Walk to Defeat ALS at Cantigny in Wheaton with a final tally of $52,264.

Putt Out ALS begins with a shotgun start at 1 p.m. Saturday at Hilldale Golf Club, 1625 Ardwick Drive. Though the event already has 100 golfers participating, Saunders wants to sell out all 144 tickets.

The cost per golfer is $125, which includes 18 holes of golf with a cart, a welcome gift, pre-round lunch and buffet dinner. Additional events include golfing contests such a $25,000 hole-in-one contest, a 50/50 raffle, silent and voice auctions, and the ALS ice bucket challenge. Online registration was scheduled to close Friday, but Saunders said the event also will welcome people registering at the course on the day of the event.

Though Ann says her husband is dealing with the disease amazingly well, facing the world with his usual upbeat attitude, a discussion about his struggles causes him to break down a few times.

"It's tough to talk about myself," Saunders said. "I have no problems answering any questions about the disease."

The couple, who have a 22-year-old son in his final year as an undergraduate at Indiana University, lived in Deer Park until recently, when they moved from their three-story home to become a neighbor of Gov. Bruce Rauner in a more accessible condo building in downtown Chicago.

As lifelong suburbanites, the couple have plenty of positive things to say about their new life in the city. Apart from chatting with the governor walking his dog, or meeting Mayor Rahm Emanuel at the dedication of Maggie Daley Park, they regularly attend live stage productions like "On Your Feet!" the story of Emilio and Gloria Estefan, at the drop of a hat.

"There's always something to do," Saunders said of life in the city. "It's action-packed and fast-paced."

Putt Out ALS

What: A golf outing benefiting the ALS Association Greater Chicago Chapter

Where: Hilldale Golf Club, 1625 Ardwick Drive, Hoffman Estates

When: 1 p.m. July 11

Cost: $125 per golfer

Format: Two-person teams, best ball rules

Information: Call (847) 882-8652 or email PuttOutALS@gmail.com