Every time Oakland Athletics right fielder Stephen Piscotty runs out to his position at the Oakland Coliseum, he looks up. Not to the sky, but to the railing in front of the bleachers in right field. Every game since May 6, there’s been a simple sign hanging from that railing: A piece of poster board, colored yellow, surrounding a white heart, bordered with A’s green. Inside that heart are a pair of green initials: “GP”.
“I love having it there,” Piscotty said last week. “It’s kind of like having her right over my shoulder, watching me.”
Stephen’s mother, Gretchen Piscotty, passed away from amyotrophic lateral sclerosis — ALS — on May 6, ending 16 torturous months of decline, rapid for the disease which is still largely a mystery. On Monday, Piscotty, his father Mike, A’s president Dave Kaval and the New York Yankees will jointly host Oakland’s first ALS Awareness Day during the series opener at 1:05 p.m., as they bring awareness not only to the disease, but also to their innovative drive to find a cure.
“I’m sure it’ll bring back some of the emotions,” Piscotty said, “but I’m prepared for it.”
When Piscotty gave his first interview with local media after his mother’s passing, he said that he wanted to do something more than mourn. He wanted to make a difference. Within a day, he and Kaval began to talk about the possibilities.
Piscotty had been traded back to his hometown A’s shortly after his mother was diagnosed, after receiving an extension from the St. Louis Cardinals, the team that drafted him out of Stanford. The two organizations worked to bring him home so he could be with her in her final months. During the first half of the 2018 season, Kaval had spent time with both Gretchen and Mike in their suite at the Oakland Coliseum, right next to his.
“I was there all the time,” Kaval said. “I got to know [Mike] and the family pretty well … Such a strong family. I could see the love between everyone, and the passion and the excitement they had for Stephen playing here.”
As Gretchen’s story spread, both in writing and on screen, Mike would ask his wife of 33 years if she was OK doing another interview, or allowing another camera crew into their home.
“She said, ‘Look, I’m good with doing this as long as nobody else has to suffer this fate,'” Mike said during a telephone interview on Friday.
Gretchen’s illness began small. As she lay in bed with Mike, she would ask him to feel her arm as it twitched. As the disease progressed, she went through a battery of tests — not for ALS, but for other neurodegenerative diseases that acted like ALS. That, Mike said, is one of the fundamental problems with studying the disease: There is no direct test, no known biomarkers that would, for example, show up in blood work.
It’s a process of elimination. Only after eliminating all other similarly-presenting conditions — lyme disease, AIDS and heavy metal poisoning, for example — is a nerve conductivity test performed. The disease is so little understood, that quick-moving ALS like Gretchen’s may not even be the same disease as more slow-acting presentations that can span years. Or, they may be different variants of the same disease.
“When you look at ALS, the terrible impact it has on the person, all of the sudden you’re in this body that doesn’t work, and you can’t move at all, and eventually, you can’t even breathe anymore, but your brain keeps working until the end,” Mike said. “It’s torture, honestly.”
While doing research on the disease, Mike visited various rare disease websites. On one, he found listed the numbers of cases of rare diseases annually in the United States. He had to click through four pages of 20 conditions per page before he found ALS. Only 20,000 Americans have the disease at any given time.
With such a small population of people affected, it’s not profitable for drug companies to come up with treatments. The fundraising that does occur, Mike said, goes towards more fundamental research, such as biomarkers, but without a concrete test, the few drugs that are available do little to slow the disease.
“There’s a couple that maybe kind of slow it down, but it’s really unclear if they work,” Mike said. “There isn’t a drug that says, ‘You’re not going to die from this.'”
It was during a trip to an A’s game with Gretchen’s doctor — Jon Katz of the Forbes Norris Clinic — that Mike asked why, when Major League Baseball hosts breast cancer or prostate cancer awareness, there are always survivors, but never for ALS. That’s when he learned of these hard realities.
“If you don’t really fix the fundamental business model, we’re not going to have success,” Mike said.
After Gretchen passed, Mike shut down. He stopped doing research. Grief is a complicated thing, and acts on different individuals in different ways. Then, in early June, as he was on the elliptical machine at a gym in Pleasanton next to Mike Crawford — father of San Francisco Giants shortstop Brandon Crawford — Mike Piscotty saw that famed former San Francisco 49ers receiver Dwight Clark had passed away from ALS.
“It just reminded me that it was time for me to start doing something,” he said.
So, Mike, Stephen and Kaval put together a plan. Traditional fundraising was still necessary, but it hadn’t produced a cure, or even a treatment.
When Mike first hit upon the idea of a prize — a monetary reward for whatever group, partnership, university or other entity can find the cure, similar to the X Prize for space flight — it got traction as he began to talk to interested parties. The prize could also fund incremental developments in research, as well, through traditional fundraising.
Lou Gehrig — who retired at 35, and two years later died of the disease that now bears his name — passed away in 1941. When Mike traveled to Houston for the A’s series against the Astros last month, he met a group of six ALS sufferers in wheelchairs just like the one to which his wife was confined in her final months, all in a row down the left field line. Since Gehrig died, scientists had split the atom, gone to the moon, mapped the human genome, extended the average lifespan by more than 15 years and cloned live animals. Still, there was no cure for ALS.
“I get that sick feeling in my gut whenever I see somebody, ‘Oh gosh,’ having gone through that with my wife, it makes me sick to my stomach, just to see people who, as Gretchen said, have that day where the bomb drops, and you hear that news,” Mike said. “It just makes you want to do something.”
That’s where Kaval’s experience with venture capitalists and startups came into play.
Kaval, too, had been personally affected by the disease. One of the founding investors in his Golden Baseball League, George Shott, had been a father figure to Kaval. The two had become close after connecting through the Stanford alumni network — Shott took his BA and MBA there — and Kaval not only leaned on Shott for funding for the league, but for advice and counsel. Shott passed away from the disease in 2009. Kaval gave the eulogy at his funeral.
“I obviously saw how debilitating it was,” Kaval said. “It was very precipitous. It was very quick. It was similar to [Gretchen].”
It took some time before Kaval, the Piscottys and the A’s found the right day, and found the right partner. On Monday, the Yankees — who, through Gehrig, have their own history with ALS — will begin what Kaval hopes is a long and fruitful campaign to end the disease. There will be video board messages from Mike and Stephen, social media posts, television and radio spots and broadcast components all aimed at spreading the word about the new approach.
With New York’s media market and the global popularity of the Yankees, Kaval hopes, the word will spread further.
On the occasion of Gretchen’s passing, the Yankees were one of several teams to reach out with donations. Before the game on Monday, the A’s will present a check for $150,000 to the Cambridge, Mass.-based ALS Therapy Development Institute. That money was raised via Stephen Piscotty’s Gofundme site, with contributions from Major League Baseball, the Yankees, fans and a $75,000 donation from the A’s. In addition, $5 from every ticket sold for Monday, as well as a portion of proceeds from sales of Piscotty’s jerseys and shirts for the rest of the season will go to the ALS institute.
“We, as a family, we had a lot of help from the A’s, got a donation page going around the timing of my mom’s passing,” Stephen Piscotty said. “Obviously, that brought in a lot of money, and was really cool to see. That was really special. The A’s have been tremendous.”
Kaval envisions different prongs to the effort as it moves forward, including engaging with politicians and other public officials, trying to get government funding for research. He envisions weekends like Mother’s Day and Father’s Day, where Major League Baseball gets involved in raising money for breast and prostate cancer. Since 2009, Major League Baseball has raised over $40 million through its association with Stand Up 2 Cancer.
“I call it creating a business model for a cure,” said Mike, who has a master’s degree in business administration. “I work for Lawrence Livermore Labs. I know nothing about medical stuff. I’m learning a lot, but that’s not my profession, but I’ve managed large software projects, a lot of challenging things, so I feel comfortable in being able to work through and gather smart people around me to create a business model.”
Once that model is defined, and a business council and research council empaneled — Mike is hoping to hold the first business council meeting in January — he will go to philanthropists with a proposal.
“[We’ll] say, ‘Look, here’s our take. We’ve got a business model. We think it’s well thought out. Here’s how we’re going to measure success, and if one of these companies, or persons and companies, or partnerships, or whatever they do to organize themselves, comes up with a cure, will you fund that prize, and probably accept the Nobel Prize at the same time?’” Mike said.
Before any of that is done, grassroots fundraising will still be necessary in order to find those biomarkers, and develop a concrete, reliable test. That would in turn be used by the individuals, companies or partnerships that would compete for the prize in Mike and Kaval’s model. That grassroots effort begins in earnest on Monday.
“I view Monday, for me, as an opportunity to get the message out about the approach, and get it in the ears of people that might be able to step up and help,” Mike said. “It may not just be funding. Right now, the business model is pretty conceptual. But, it’s pretty simple … We need to get the word out about the model. I love the word hope. I felt that was the hardest thing to have any of, when you’re going through that.”
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