Decades later, George Brett and Tom Watson keep honoring their promises to fight ALS

As the cruel disease might be to anyone who hasn’t witnessed its ravages directly or personally, ALS once was a vague and distant notion to George Brett and Tom Watson.

Sure, Brett knew of Lou Gehrig the way most of us did: from his shattering 1939 “luckiest man” farewell speech — weeks after playing the last game of his career, an exhibition in Kansas City — in the throes of the disease soon entwined with his name.

On Monday at Brett’s 40th annual ALS fundraiser, now known as the Joe McGuff ALS Golf Classic for the renowned KC Star editor and columnist who died from the illness in 2006, Brett literally echoed the words “myself, myself, myself” in homage to Gehrig’s moment and its reverberations through the Yankee Stadium sound system.

Moved as he’d always been by the recording, though, Brett didn’t know what Lou Gehrig’s Disease was. Didn’t know it was really called amyotrophic lateral sclerosis. Or that it was “ALS” for short.

Until, that is, he saw its horrors for himself through Woolf Brothers clothing executive Keith Worthington — with whom Brett became friends through a fashion shoot soon after being called up by the Royals 50 years ago this August.

“One day I was in his office, and he’s on a cane,” said Brett, speaking at the Nicklaus Golf Club at LionsGate. “And a couple of weeks later, he was on crutches. And then a wheelchair. And then I started seeing the progression of what happens when you get this disease. …

“And that’s when I finally said I’ll continue doing what you do trying to find a cure and help the people that get the disease in Kansas City live a normal life.”

Those weren’t merely words when it came to Worthington, in whose name the local ALS Association chapter initially was founded and who died in 1984 after 11-plus years contending with ALS.

Brett considered it a solemn pledge. So much so that it’s enshrined on the base of his statue in Kauffman Stadium with the words “I made a promise to a friend and I intend to keep it.”

Before Watson became intimately acquainted with the disease and made a vow of similar conviction, he also had no real concept of its meaning. He couldn’t pronounce the full name in which he’s so conversant now and, like anyone at a distance, he could hardly comprehend what ALS really was or looked like up close.

For a sense of how he came to understand it, though, you could see it in a poignant snapshot on Monday as he spoke about the loss of caddie and dear friend Bruce Edwards to ALS on the first day of The Masters Tournament in 2004.

As Watson began to recount getting the news that morning about a year after Edwards was diagnosed, he took a deep breath and paused before finally speaking with a tremor in his voice and letting tears flow.

He recalled his late wife, Hilary, delivering the news.

“He decided to check out at the tournament he loves the most,” Watson said. “I guess it’s karma.”

And maybe it’s a form of fate, too, that Watson would tell Edwards “I’ll work on this and try to find a cure for the rest of my life” and then be able to align with Brett toward the cause.

“Because the impact is incredible,” said Colleen Wachter, territory executive of the ALS Association, noting that raising awareness of ALS and helping people understand the severity of it is vital to getting more people involved in the fight.

While Brett and Watson often over the years have felt anguished or angered about the glacial pace of advances, each and Wachter expressed optimism over the recent FDA approvals of Relyvrio and tofersen and the spirit of collaboration they reflect.

It’s a long way from the sorts of desperate concepts Watson recalled Edwards checking out. Such as … cobra venom and “massive doses of vitamins,” as Watson reminded on Monday.

“All these things came up in our investigations, and, sadly, none of them obviously worked,” he said, noting the first two drugs passed since 2017 provide “a little bit of hope.”

Take it from someone who’s living it: my friend and hero to all Sarah Nauser, who was diagnosed with ALS in 2018 and has been a relentless advocate and warrior virtually ever since.

Relyvrio, she noted by an email crafted with her eyes through a TD Pilot, an eye-controlled communication device, is a compound of an over-the counter medication and an already FDA approved drug she had previously been prescribed off-label.

“Since taking the combination I have had little to no progression in over 2 years,” she wrote while lamenting, “So many others did not have the same opportunity.”

While noting that Relyvrio is thought to extend life from six months to a year, “meaningful time for someone with a terminal illness,” though, she pointed to a looming issue.

“The price is astronomical and many ALS patients don’t have the financial means to pay for it even with insurance,” she wrote. “I do believe over time this will work itself out. At least I hope.

“I believe anyone up against a terminal illness deserves any and all ‘tools’ possible to combat the disease. We have nothing to lose and everything to gain.”

Then there’s tofersen, a gene-based therapy for people living with SOD1-ALS.

Per the ALS Association, “Mutations in the SOD1 gene are found in about 10-20 percent of cases of familial ALS, as well as 1-2 percent of sporadic ALS cases.”

But the association also calls it “a win for the entire community” since, among other points, “it marks the first use of accelerated approval in ALS” and is the first gene-based therapy to be approved.

“This is huge for ALS even though the majority of ALS patients don’t qualify,” Sarah wrote, later adding, “Through social media I have seen the significant impact tofersen has made in other families’ lives. It has halted many individuals progression. I’m hopeful tofersen can provide hope and time for these families.”

In a bigger picture sense, she said, “Changes are happening. Drugs are getting approved. There’s so much hope.”

Finding a cure, sadly, remains another matter.

But such steps and this sort of hope drive Sarah — not just for herself, but as an example to others and to try to help future generations.

It drove my friend Pam Callahan, who died in 2012 after trying to join every experiment, project or trial possible for anyone she might be able to help.

It drives the ALS Association in so many different ways.

And, all these years later, it still sparks Brett and Watson — who could never unsee or forsake it once they understood it.