(From left to right) Sue MacInnes, Emily Somers, Molly MacInnes, Chris MacInnes, and Adrienne McCauley

Donor Stories

Fighting ALS One Step at a Time 

Doug MacInnes was the epitome of selflessness. The stay-at-home dad, affectionately dubbed "Mr. Mom" by friends and family, carried on that trait even after he was diagnosed with ALS in the fall of 2010.  

“He really took the time to make sure everyone else was doing okay and following their dreams,” says Doug’s eldest daughter, Emily Somers.

Less than two years after his diagnosis, Doug—who had completed more than 40 triathlons—succumbed to the disease that stole his ability to control all muscle movement.

Currently there is no cure for amyotrophic lateral sclerosis (ALS), commonly referred to as Lou Gehrig’s disease, but the MacInnes family of Trout Valley, Illinois, is determined to raise awareness and funds to support ALS research.

Steps for doug 
“We want people to channel their energy into doing something good for ALS,” says Molly MacInnes, the youngest of the three MacInnes children. Shortly after her father was diagnosed, Molly established Steps for Doug, a nonprofit dedicated to raising money for ALS patients and their families.

Because so many of Doug’s family and friends were inspired by his athletic endeavors, they recruited more than 50 people to run the Chicago marathon last year and to raise money for ALS. That effort, along with other fundraising events the family hosted, netted more than $45,000, most of which they donated to Doug’s doctor, Raymond Roos, MD, who was instrumental in helping to maintain his quality of life.

“Dr. Roos was very calm, caring, and concerned,” says Doug’s wife, Sue MacInnes. “He would pay very particular attention to the details and would ask very direct questions of Doug. There was no dancing around the issues.”

Donor support aids doctor's research
Roos, the Marjorie and Robert E. Straus professor of neurology at the University of Chicago Medicine, is an expert on neurodegenerative diseases like ALS and multiple sclerosis. In this era, where funding from the National Institutes of Health has dwindled, donor support is extremely important in order to pursue creative kinds of research, says Roos.

“Despite all that we have learned about ALS over the last 20 years, we only have one drug that makes a difference and is FDA approved,” he says. “That drug helps to extend life by three months, but with no improved quality of life. There is a desperate need for a more effective treatment.” Most patients with ALS die just three to five years after the onset of the disease.

“At one point very early in my career I was reluctant to specialize in ALS because we have no way of slowing down or curing the progressively fatal disease,” says Roos. “But on the other hand, the physician plays a very important role in providing symptomatic treatments as well as guiding the patient and family with end-of-life decisions.”

Thanks to the MacInnes family and their planned contributions to the field, Roos is optimistic about the future for ALS patients.

“ALS research is on fire, and we have some extraordinary new findings, especially related to genes that cause ALS,” says Roos. “Next year there will be some very exciting new understandings, as well as a host of experimental models that will lead to the development of new drugs.”

keep calm and carry on
Shortly after their father was diagnosed with ALS, the MacInnes children followed their father’s advice, which was always to “keep calm and carry on.” But they each did so closer to home. Molly, who recently completed a degree in integrative physiology and neuroscience, wrapped up her studies in just three years so she could have additional time with her father.

The MacInnes’ only son, Chris, owner of Dulcedo Construction LLC in Cary, Illinois, left his general contracting business in Arizona to move back home and remodel his parents’ house so that it was functional for their father, who was eventually confined to a wheelchair.

“Chris single-handedly gave dad back his quality of life by adapting their home to dad’s disease,” says Emily. And Chris’ girlfriend, Adrienne McCauley, who had been living in Austin, Texas, also packed up to fill the role that Doug played by helping around the house and taking Doug to his appointments.

For Sue, chief marketing officer at Medline Industries, a medical supply company in Mundelein, Illinois, her goals in the workforce couldn’t have been realized without the sacrifices of her husband.

“It has to be an egoless man to stay at home with the kids, and not only did he do it, but he did it well,” she says. “And I’ve excelled at my job because of it.”
Even after his death—which was exactly one week shy of their 30th wedding anniversary—Doug’s selfless nature was still very much alive. “He got me this necklace with “30th” on it and a pair of earrings and placed them in a drawer and had Emily wrap them with a promise to deliver them on my anniversary,” Sue says. “The week after he died on our anniversary, I got my presents. That’s the type of person he was.”