Bill Haarlow said his dad first got the sense there might be something physically wrong when he was on a golf trip over the holidays.
“Something didn’t feel right,” the Hinsdale village trustee said of his father, Bill Haarlow Sr.
In 2001, after returning home to Chicago and visiting Northwestern Memorial Hospital with his wife Lynne, the elder Haarlow—a through-and-through Hinsdalean, according to his son—was diagnosed with amyotrophic lateral sclerosis (ALS), the rare but deadly neuromuscular disorder commonly referred to as Lou Gehrig’s Disease. In 2002, Bill Haarlow Sr. died at age 60.
The average patient with ALS lives for three to five years after their diagnosis. But the disease, which shuts down a patient’s muscle motor neurons and ultimately leads to paralysis and the inability to swallow and breathe, can spread rapidly.
“That was the case with my dad,” Haarlow said. “It took a rapid course, which obviously was very challenging for him and for all of us physically and emotionally.”
During Bill Sr.’s battle with ALS, his family learned of, and turned to, the Les Turner ALS Foundation, an organization that raises funds for ALS research, care, and education while operating two research laboratories and a patient-care clinic at Northwestern’s Feinberg School of Medicine.
“The foundation worked with us in several ways and made what was a very difficult and challenging journey a little easier,” Haarlow said.
The Haarlows have done their part to give back to the foundation since losing their father and husband, and on Saturday night, Bill and his family—wife Laurel, mother Lynne, younger brother Blair, and sister-in-law Lauren—will be honored for their contributions at the Les Turner ALS Foundation’s 25th Annual “Hope Through Caring” Award Dinner Dance at the Four Seasons Hotel in downtown Chicago.
“The Haarlows are very supportive in so many ways in spreading the word and getting their extended family and friends involved,” Les Turner executive director Wendy Abrams said.
Abrams said the Haarlows began their involvement with the foundation by donating financially, but support has since become physical, as well. Bill Jr. serves on the board of directors and the family attends numerous fundraising events and even hosts their own.
At Saturday’s gala, about 450 guests will dine, dance, listen to speakers, and bid on auction items that include a golf trip to Scotland and a vacation to Augusta, Ga., with passes to attend the 2013 Masters golf tournament.
Abrams said Saturday's gala is the foundation’s second-biggest fundraiser of the year.
“It’s a very heartfelt evening,” she said. “It’s a really beautiful, meaningful event.”
And the guests of honor, Abrams said, will likely feel a range of emotions.
“I know that the Haarlows are going to have a difficult time during some of it and hopefully a wonderful time during most of it."
Many of the names on the guest list for Saturday’s event are of people with connections to Bill Haarlow Sr. Along with dozens of family members, there will be a large number of Haarlow’s classmates from the Class of 1959 and the Princeton University Class of 1963 in attendance.
Haarlow Jr., a professor of history and admissions administrator at Northwestern University, said it’s “deeply humbling” both to be honored by the foundation and to have the support of many people who knew his father.
A Hinsdale native, Bill Sr. raised his family in the Woodlands neighborhood off of South County Line Road. In his time, he served as the president of the as well as the Hinsdale Golf Club. He was a member of the Plan Commission, coached Little League, and was very involved with .
Haarlow said his father was an athletic man and an avid golfer throughout his life, which made his fight with ALS, a purely physical disease that paralyzes the body while leaving the mind intact, even more difficult.
“To put it plainly, you become a prisoner in your own body,” Haarlow said.
The village trustee said significant breakthroughs in ALS research have been made at the Les Turner labs, but more support is needed to find a cure so more families don't have to experience the same pain that the Haarlows have.
“Like a lot of diseases that are serious but aren’t widespread, ALS has not attracted the attention and funding that it needs,” Haarlow said.
Haarlow said anyone interested in getting more information about ALS and how they can join the fight against it should visit the Les Turner ALS Foundation website. There, they can donate to the foundation’s efforts and register for volunteer opportunities.
The foundation’s biggest fundraiser of the year is the ALS Walk 4 Life, which takes place in September at Solider Field.
Abrams said her foundation is “always” and “absolutely” looking for support, and credited the Haarlows with bringing in plenty of it.
“They are true advocates for the cause,” she said.