SEATTLE — Bill Boone of Mukilteo has a shadow box on his wall to display the Mariners’ jersey of Bret Boone — got to give props to your namesake, right? — and an inset photo of Lou Gehrig.
It speaks to Boone’s love of baseball, and also to the diagnosis that rocked his life in March of 2020. After being puzzled by weakness in his arms for over a year, Boone received the devastating news that he had amyotrophic lateral sclerosis — better known as ALS or, colloquially, Lou Gehrig’s Disease.
“You tend to see life in a little bit different way when you know you’ve got a very short time ahead,” said Boone, who with his wife, Lori, has a summer of travel planned. “Whatever that looks like, if you think it’s two, three years, or if it’s 10 years, our outlook is that we want to experience and do as much as we can while we can.”
Now 63, Boone is one of about 33,000 people in the United States living with ALS. When the Ice Bucket Challenge became an international internet phenomenon in 2014, raising about $115 million in donations for the ALS Association, there were an estimated 18,000 people living with ALS. The increase is not because more people are being diagnosed, according to Amara Bates, managing director of development with the Evergreen Chapter of the ALS Association; rather, because the money raised helped lead to advancements over the ensuing decade that have kept ALS patients alive longer, including two new, recently approved drugs.
It’s a symbol of hope that the ALS community clings to. But the quest to solve ALS is a never-ending one, and frustratingly slow. Three years ago, MLB entered that arena with the formation of Lou Gehrig’s Day — a long overdue but still-meaningful attempt to commemorate the Hall of Famer who succumbed to ALS and shed light on the cruel disease.
MLB will observe Lou Gehrig Day on June 2 this year. The Mariners will be out of town that day, so instead on Wednesday, they will hold their own ALS Awareness Night at T-Mobile Park. By harmonic convergence, none other than Gehrig’s Yankees will be in town, adding heft and symbolism — as well as an anticipated near-sellout crowd — to this important occasion.
Hardcore baseball fans might recognize that June 2 is the day Gehrig became the Yankees’ starting first baseman in 1925, replacing Wally Pipp and making Pipp forever the personification of someone who gets supplanted by a player who seizes their opportunity. Gehrig went on to play in 2,130 consecutive games, the iron-man record until Cal Ripken Jr. surpassed it in 1995.
June 2 is also the day Gehrig died in 1941, about two years after being diagnosed with ALS. MLB honors just three athletes annually with dedicated leaguewide days — Jackie Robinson, Roberto Clemente and Gehrig.
The Mariners’ event, while not officially sanctioned as part of the Gehrig festivities by virtue of the fluke of scheduling, will nevertheless have many of the same goals. Namely, illuminating and celebrating efforts to find a cure for this progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord and is 100% fatal.
Beyond that, it is a time to unite many of the tentacles of the ALS community, all of whom have the same ultimate goal. Numerous organizations have collaborated to plan and execute ALS Awareness Night, including the ALS Association, ALS TDI, I AM ALS and the Muscular Dystrophy Association.
“This has given us a great opportunity to work with other ALS organizations to come together as a united front,” Bates said. “Because this is a rare disease, we need to work together … We’re all working toward the same goal of getting rid of this disease.”
In addition, one of Wednesday’s organizers, Valerie O’Mara, who is in her fifth year living with ALS, has received considerable guidance from Mike Piscotty and Phil Green of The ALS Cure Project. Piscotty, the father of former Oakland Athletics outfielder Stephen Piscotty (now in the White Sox organization), lost his wife, Gretchen, to ALS in 2018. Green, a former University of Washington football player, was diagnosed with ALS in 2018 and is now a leading advocate. Piscotty and Green were part of the committee that convinced MLB to observe a day in Gehrig’s honor.
His organization — which is entirely voluntary and earmarks 98% of every dollar to fund ALS research — conducts an annual ALS Innovation Symposium to bring together researchers from 19 different countries. The goal is to form a strategic plan to tackle what is an extraordinarily complicated disease, one that has baffled scientists since Gehrig’s time.
“I think the approaches are good,” Piscotty said. “What we’re lacking is enough funding to get all the research that’s been identified as vital going. So days like Lou Gehrig’s, they are awesome, because we spread the word. … I hope that with Lou Gehrig’s Day people get an appreciation for really the cruelness of the disease.”
Piscotty lived it with his wife, Gretchen.
“When you see a loved one going through that and they’re in that state, especially towards the end where you’re in these $60,000 wheelchairs to just get around, and you have an apparatus on you to breathe and you have feeding tubes — it’s not a pleasant way to see a loved one go,” he said.
Boone, who will be part of a group first pitch on Wednesday, is thankful to be well enough to still work from his home. He has a computer provided by the ALS Foundation that employs eye-gaze technology to allow him to “mouse” by reading his eyeballs. He also uses Dragon Dictation to respond to emails and fill in spreadsheets.
Since his diagnosis, Boone’s hands and arms have become “pretty much un-useful,” in his words. He also has difficulty holding up his head without a brace, and his walking has become more labored.
But Boone maintains a remarkably upbeat attitude, crediting his wife, Lori (“my hero, my All-Star”), with helping him throughout the day. He is involved in clinical drug trials and research to help the quest for a cure.
“My outlook is I’d like to become more of a guinea pig,” he said. “I’d rather be someone to do testing. I’ll do anything to advance knowledge and understanding and potentially, hopefully, a cure down the road. Until that, we keep doing all we can do.”
That is the similar attitude of another Mukilteo man with ALS, 71-year-old Robert Coe, who will be part of an eight-man group singing the national anthem, barbershop-quartet style, on Wednesday. Coe, a former Air Force pilot who retired as a colonel after 30 years, was diagnosed with ALS in fall of 2021.
One of Coe’s goals for events like ALS Awareness Night is to help researchers hone in on the baffling connection between military service and ALS. Studies have shown that veterans are twice as likely to get ALS, regardless of whether they served in peacetime or war. There are numerous theories but no definitive conclusions.
Coe said that he was an early participant in the F-16 program, “and I’m the second guy out of our group of six to come down with ALS.”
Coe is encouraged by ongoing research into medications to slow the progression of the disease, and by the fact that “there’s a lot of smart people thinking about it.”
On Wednesday at T-Mobile, it’s a good time to support and honor those smart people as well as those living with ALS and their loved ones — and to carry that support forward.