Within hours of his diagnosis with amyotrophic lateral sclerosis, Pete Frates hung a plaque featuring the legendary Lou Gehrig above his bedroom door frame. For as long as he could, before what is known as Lou Gehrig’s Disease robbed him of the ability, Frates would leap and slap that plaque, Notre Dame-style, each time he’d leave the room.
That’s the fighting spirit Gehrig continues to instill in ALS patients, 82 years after his diagnosis and 80 years after his death. And it is for that reason that “The Iron Horse” will be honored Wednesday, on the inaugural Lou Gehrig Day across Major League Baseball.
For the late Frates, who spearheaded the famous Ice Bucket Challenge that raised more than $200 million for ALS research, and for the millions of patients and families affected by ALS, Gehrig was and is an icon. And so the tight-knit ALS community banded together, via the Lou Gehrig Day Committee, to compel MLB and its 30 clubs to create this event, which they hope will have an Ice Bucket Challenge-like impact on ALS awareness and research so that one day science can find a solution for a still-incurable disease that weakens muscles and impacts physical function.
“It was a grassroots effort,” said Pete Frates’ mother, Nancy, “by patients and families who were affected by this disease who found it to be unacceptable that there was not a day to honor Lou Gehrig, and made it happen.”
It will happen on June 2, which has significance both as the date in 1925 that Gehrig became the Yankees’ starting first baseman and the date in 1941 that he passed away at the age of 37.
“We all have our own things that we can do individually,” said Hall of Famer Cal Ripken Jr., who is forever linked to Gehrig after breaking his consecutive games streak in 1995. “But when we collectively come together in a big way and all 30 teams come together, and creating this day, the power that comes from that is remarkable.”
Here is how Lou Gehrig Day will be honored across MLB:
• Every team with a home game Wednesday will display “4-ALS” logos in their ballpark, commemorating Gehrig’s jersey number. All players, managers and coaches will wear a special “Lou Gehrig Day” patch on uniforms, and red “4-ALS” wristbands will be available to be worn in-game. (Teams that are off Wednesday will observe Lou Gehrig Day on Thursday.)
• Steve Gleason, the former New Orleans Saints safety whose fight with ALS was captured in the documentary “Gleason,” will synthetically recite a portion of Gehrig’s famous “Luckiest Man” speech in a video narrated by Cal Ripken Jr. and produced by MLB Network that will be shown on video boards during the fourth inning (or pregame in some ballparks) of all games.
Gleason, who lost the ability to speak due to ALS, recites the speech with the help of Project Euphonia, a Google Research team focused on helping people with atypical speech be better understood. Using previously recorded voice samples from Gleason, Project Euphonia was able to create an authentic, personalized version of his voice via computer technology.
“This is the genesis of a powerful and important tradition for the ALS community,” Gleason said through an augmentative communication device. “I’m humbled and honored to be alive and to be a representative for all the people and families who are working to live with this brutal and devastating disease.”
• Special ceremonies and activities -- such as ceremonial first pitches, the singing of the national anthem and on-field recognition -- will be centered around the ALS community.
The Cubs, as one example, will auction off limited-edition Kev Roché prints depicting Cubs players as superheroes and other unique items and experiences to benefit Project Main St., the nonprofit broadcaster Jon “Boog” Sciambi helped found to improve the quality of life of ALS patients. (Gleason and his son, Rivers, will throw out the ceremonial first pitch, and Sciambi will handle the seventh-inning stretch duties).
• A special charitable auction is ongoing at auctions.mlb.com to benefit the Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital, which was selected by MLB and the Lou Gehrig Day Committee to be the beneficiary of all charitable fundraising efforts centralized out of the Commissioner’s Office. (Individual clubs will continue to work directly with and fundraise for national or local organizations they have historically supported.)
• Lou Gehrig Day T-shirts will be available for purchase, with royalties going to the Expanded Access Protocol Program at the Healey Center for ALS.
• On July 4th weekend, Candy Digital and MLB will release their first non-fungible token -- a 1-of-1 of Gehrig’s “Luckiest Man” speech from July 4, 1939. Proceeds from the sale of the NFT will support ALS charities.
Lou Gehrig Day will have particular resonance with A’s outfielder Stephen Piscotty, Rockies outfielder Sam Hilliard and Mariners catcher Jacob Nottingham, all of whom have had close family members diagnosed with ALS.
“I’m not sure how I’m going to feel,” said Piscotty, who lost his mother, Gretchen, to ALS in 2018. “But I imagine there will be a lot of thoughts about my mom. I’m really excited to celebrate Lou Gehrig and the man he was. What a role model for so many.”
But as with the Ice Bucket Challenge, Lou Gehrig Day is an opportunity for those who have not personally been affected by the disease to gain a greater understanding of what ALS is and what they can do to help.
Just as it was when Gehrig was diagnosed in 1939, ALS is a death sentence.
“We have put men on the moon, rovers on Mars,” said Phil Green, an ALS patient and member of the Lou Gehrig Day Committee, “and yet this particular disease continues to baffle some of the smartest people on the planet.”
Not only is there no cure, but many patients don’t have access to clinical trials featuring promising therapies. The goal of the Healey Center’s Expanded Access Protocol Program is to meet that need through compassionate research.
ALS is usually described as a “rare” condition, and it was certainly rare and mysterious at the time of Gehrig’s diagnosis. But that is becoming less true over time. The lifetime risk of ALS is 1 in 300 by the age of 85, according to a 2006 study in the Journal of Neurology.
“As the population ages,” said Dr. Merit Cudkowicz of the Healey Center, “this really devastating illness, which occurs without any racial, ethnic or socioeconomic barriers, will become increasingly common.”
That’s the ultimate importance of Lou Gehrig Day. Yes, his performance and durability made him one of the greatest players of all time, with a .340 career average, 493 home runs, 1,995 RBIs, 23 grand slams and 2,130 consecutive games played. But those numbers aren’t why Gehrig has joined Jackie Robinson and Roberto Clemente as the only players with their own dedicated day on the MLB schedule.
This is happening because of Gehrig the man -- the grace and humility with which he battled ALS and the inspiration he still provides for ALS patients.
The Lou Gehrig Day Committee does not have a target fundraising goal in mind, given that the money will be spread to various ALS charities and organizations that the individual clubs work with.
But there is a broader goal in mind.
“We believe the impact will be significant, not only on the funds raised for research but also in shifting public policy, legislations that impacts ALS,” Green said. “It’s hard to monetize those benefits that we’ll see from this day, but I’m hoping that we’ll have a bigger impact than the highly successful Ice Bucket Challenge.”