Lou Gehrig Day close to Sciambi's heart

CHICAGO -- In Boog Sciambi's mind's eye, he can picture peering out from the broadcast booth and witnessing a packed ballpark featuring a sea of red in the stands.

An important step toward seeing that become reality was Major League Baseball establishing June 2 as Lou Gehrig Day. When it comes to helping those impacted by amyotrophic lateral sclerosis (ALS), raising awareness is critical.

"My fantasy," said Sciambi, sitting in Wrigley Field on a recent morning, "would be to blanket this stadium on June 2 with people wearing 4-ALS T-shirts, just so more people are aware."

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On this Wednesday, June 2, the league-wide event will include all players, managers and coaches wearing a special uniform patch, with 4-ALS wristbands also available. Teams around MLB will have special programming related to the cause at each ballpark hosting a game that day.

"It's something that I wanted to have happen for a long time," Sciambi said.

ALS is commonly known as Lou Gehrig's disease, referencing the Yankees legend who was inflicted by the illness leading up to his death on June 2, 1941. According to ALS.org, more than 5,000 people each year are diagnosed with ALS, which comes with a life expectancy of two to five years.

There is no cure for ALS, which attacks nerve cells and results in a rapid decrease in motor functions and muscle control. The ALS Association estimates that the average out-of-pocket cost for those impacted by the disease is roughly $250,000.

Sciambi can cite all of those statistics. He watched a close friend, Tim Sheehy, deal with ALS and succumb to the illness in 2007. Before his death, however, Sheehy and a group of close friends -- Sciambi among them -- formed Project Main St., a nonprofit organization with a mission to help others impacted by Lou Gehrig's disease.

"There's a part of it," Sciambi said, "where you feel like you're doing something to honor your friend, you know? It gives us a chance to think about him and smile. And to just keep him in your thoughts."

Sciambi said Sheehy came up with the name for their organization. It was a tribute to Main Street within their childhood neighborhood on Roosevelt Island (between Manhattan and Queens) in New York. The cause stemmed from Sheehy and his wife, Katie, being "overwhelmed" by medical costs.

The initial fundraiser event included a show by the band Hootie and the Blowfish, whose members were college friends of Sheehy. The proceeds went to helping Sheehy's family, and also to the formation of Project Main St., which has grown into a national nonprofit.

Project Main St.'s slogan is "Until there is a cure for ALS, there is care." That gets to the heart of the group's approach, which is to help provide financial assistance to families. That could include helping pay for healthcare, equipment (such as eye-gaze machines or wheelchairs), transportation or home renovation, among other things.

"I would love our charity to go away," Sciambi said, "because that would mean we cured the disease. In the meantime, I'm passionate about the fact that you've got to raise money, and it's got to be in both spaces. There's got to be money for research, but we can't leave behind the people that are living with the disease."

In the process, Sciambi said Project Main St. also creates community, helping those dealing with ALS to not feel so alone.

"Yes, people need financial help," Sciambi said. "But the other part is, as your condition declines, you become more isolated, because you're less mobile, and eventually you can't speak. So your world becomes tiny. ... We're trying to build community."

While the COVID-19 pandemic has impacted the softball game and gala events held annually by Project Main St., Sciambi is hopeful about what will come in the future. He hopes to have the Cubs and Project Main St. team up for events down the road, helping those impacted by ALS in Chicago.

Sciambi added that the Cubs are helping facilitate an auction, which will have some proceeds going to Project Main St. In the meantime, Sciambi is looking forward to witnessing the June 2 events, and he looks forward to seeing how it can grow in the future.

"Awareness is really the first thing. It really is," Sciambi said. "If some 7-year-old kid sees the patch and says, 'Dad, what's ALS?' That's a win. It leads to explaining, because we need more people to know about it, what it is. To me, it's all about awareness."