MLB marks Lou Gehrig Day, but Jon ‘Boog’ Sciambi has become an advocate for those with ALS

For at least one night in Wrigley Field on Tuesday, these three initials were at least as important as PCA.

ALS.

Boog Sciambi is driven by a desire to see the day when all of us understand the implication of those letters for the ones stricken with Amyotrophic Lateral Sclerosis. ALS is a progressive nervous system disease that affects how nerve cells communicate with your muscles. ALS leads to muscle weakness that gets worse over time, according to the Cleveland Clinic, and affects how you move, speak and breathe. It is a beast that shows no mercy.

Sciambi, the Cubs’ TV play-by-play man, wants us to remember ALS not just once a year on Lou Gehrig Day, as the Cubs observed Tuesday with pregame ceremonies honoring the memory of the New York Yankees’ Hall of Famer, along with fans with ALS and their families invited onto the field. On June 2, 1941, Gehrig succumbed to the affliction, which in the public mind quickly became known as Lou Gehrig’s disease.

That’s a good start by MLB, which only a few years ago conceived Lou Gehrig Day. ALS should be regarded as baseball’s disease. But until a cure is found, there is work to be done. Raising the millions necessary to do the research to find the cure. But just as important — and Boog might argue even more so — is sending an urgent message to those who are battling this rare affliction that they are not alone.

“When people are being affected by ALS,’’ Sciambi said, “their mobility starts to disintegrate and their ability to communicate declines, and so their world gets really small.

“So when you’re able to reach out and say, ‘Hey, what’s up? Do you need help? Would you like to go to the Cubs game on Lou Gehrig Day? What can we do?’

“I just think I realized how small your world gets after a while when you’ve had the disease, that you just want to feel seen. And I didn’t realize that you have the ability to give that to people, to say, ‘Hey we didn’t forget about you. What can we do to make today special for you?’’’

There is a cruel irony to ALS. Gehrig, its most famous victim, was known as the “Iron Horse” for his durability. He played in 2,130 consecutive games, a streak that ALS brought to an abrupt end on April 30, 1939. It wasn’t until seven weeks later, on Gehrig’s 36th birthday, that he announced his diagnosis

His streak stood as the major league record until another Hall of Famer, Cal Ripken Jr., broke it on Sept. 6, 1995, 56 years later. Gehrig died less than two years after he broke the news of his diagnosis.

And even a crueler irony: We are no closer to a cure than when Gehrig succumbed 85 years ago. To date, no one has yet to survive ALS, whose exact cause remains unknown. In about 10% of cases, ALS is inherited from a parent, according to the Mayo Clinic.

Typically, patients live another three to five years after diagnosis, though the Cleveland Clinic reports that 10% to 20% of patients live at least 10 years.

Sciambi adopted ALS care as a personal mission when Tim Sheehy, a childhood friend who grew up on Roosevelt Island in New York, was stricken with the disease in 2005. In the time he had left — two years — Sheehy founded a charitable organization, Project Main Street. Sciambi became an early supporter, and has continued in that role for nearly 20 years.

Among other things, Sciambi and Project Main Street have partnered with the Chicago-based Obvious Shirts to sell T-shirts that say “End ALS” in the colors of all 30 major-league teams. For the sixth consecutive year, the Cubs and Sciambi’s employer, Marquee Sports Network, are sponsoring an on-line auction to benefit Project Main Street (you can bid at cubs.com/alsauction.) In addition, the charitable arm of MLB is also conducting an auction in which one of the items is a Pete Crow-Armstrong-autographed bat.

“I mean, look, you’re trying to raise money, and you’re trying to help people with their quality of life, but there’s that intangible component where you can do this thing for people that I hadn’t really contemplated,’’ Sciambi said.

Making people feel seen. Making people feel like they haven’t been forgotten.

“There’s an element of it that’s just so (expletive) sad, because ultimately everybody dies,’’ Sciambi said. “But there are families that I stay in touch with, and that’s really cool.’’

Sciambi went to school at Boston College. That’s where the captain of the baseball team, Pete Frates, was diagnosed with ALS and, together with a New Yorker, Pat Quinn, who was diagnosed with the disease around the same time, came up with the Ice Bucket Challenge, which raised millions for research. Sciambi remains friends with John and Nancy Frates, Pete’s parents.

Steve Piscotty, who was an outfielder for the Athletics, lost his mom, Gretchen, to ALS. Steve’s dad, Mike Piscotty, has spearheaded numerous fund-raising endeavors for ALS research. He is in regular contact with Boog.

Chris Snow, an elegant baseball and hockey writer who was hired by the NHL’s Calgary Flames for his ground-breaking work in data analysis for that sport, lost his dad, Bob, two uncles and a cousin to ALS before being diagnosed himself. Boog gave Snow’s family a lasting memory when he invited Chris and Kelsie Snow and their two children, Cohen and Willa, onto the field.

And perhaps most poignantly, Sciambi became acquainted with MLB researcher extraordinaire Sarah Langs when they worked together for ESPN during the pandemic. Sciambi was broadcasting from ESPN’s Bristol studios during the pandemic; Langs, who had once been sports editor of the University of Chicago Maroon, provided him with the kind of info only she can provide.

If there is a face of ALS in MLB today, it is the unwavering smile of Sarah Langs, who continues to work through all that ALS has thrown at her, all the while tweeting out, “Baseball is the Best!” On a daily basis, multiple times a day.

When Sarah told her best friend, baseball reporter Mandy Bell, of her diagnosis, Mandy would later write, she cried.

“I’m sorry,’’ Sarah said.

“What on earth are you apologizing for?’’ Mandy responded.

“Because I don’t want to make you sad,’’ Sarah said.

We’re sorry, Sarah. Like Mandy Bell, we, too, are sad. But we are in awe of your courage, and of Boog’s compassion. And we, too, live in hope.