COUNTRYSIDE – Since Mary Lou Pisone lost her husband, Rich, to ALS in 2001, Pisone has been a relentless supporter of research and care for people living with the neurodegenerative disease, which often leads to paralysis and death within three to five years after diagnosis.
Currently, there is no cure for the disease.
Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, took Rich’s life just 18 months after he was diagnosed. Before he died, his family held a Rockathon event for him at Lyons Township High School to raise money for ALS research. They continued the event for a few years and now participate in Walk4Life, a fundraiser event for the Les Turner ALS Foundation that includes a walk along Chicago’s lakefront.
As she continued to support ALS research, Pisone was asked to be a member of the foundation’s board of directors. Last year, the foundation’s director recommended Pisone to serve on a U.S. Department of Defense panel to review scientific proposals for ALS research.
From Dec. 15 to 17, Pisone will head to Baltimore with a group of ALS patients and others like herself who lost a family member to the disease to decide which projects the department will fund.
“I’m very honored to be a part of it,” said Pisone, of Countryside. “I take it very seriously because our group has to be responsible for deciding which of these many, very talented groups of investigators with some really good ideas is going to get these two grants.”
Before going to Baltimore, Pisone is reviewing 11 grant proposals from scientists at hospitals and universities throughout the country. Research of ALS is crucial because it is a highly complex disease with many causes, Pisone said.
Recently, a drug was developed that can extend survival for ALS patients for two to three months – a big win in the community – but it’s far from a cure.
“You can’t imagine the science that went into figuring that out,” Pisone said.
Pisone will help pick two projects, one for the most promising procedure and one for the most unique idea, each of which will receive $1.5 million in governmental funding. Preparing to be involved in such an important decision has been a lot of work, Pisone said, but well worth it.
“It’s so interesting to see what people are doing. The ideas they come up with are phenomenal,” she said. “It’s a way for me to pay forward the amazing help I was given by our foundation – the nurses and the doctors and all the people who are involved.”
Rich was treated at Northwestern University’s Les Turner/Lois Insolia ALS Center, which treats 90 percent of ALS patients throughout the region, Pisone said. She hopes to continue to serve on the review panel to be a part of the effort that, she hopes, finds a cure for ALS.
“That’s the ultimate, I think, for everybody involved,” Pisone said. “They’re sticking around until they can say, ‘It’s done.’ And people can say, ‘I’m an ALS survivor.’”