Piscotty family continues fight against ALS
Mike Piscotty’s mission is to fight long odds, so there was no way a little thing like a global pandemic was going to throw him off course.
Mike, father of A’s outfielder Stephen Piscotty, has made it his life’s goal to work toward a cure for ALS (amyotrophic lateral sclerosis), the devastating disease that robbed him of his wife and his three sons of their mother Gretchen in 2018.
This weekend, while the A’s and the Giants are playing a threegame series in Oakland, Piscotty’s ALS CURE Project will be hosting a virtual fundraiser, complete with virtual auctions and virtual beer, wine and whiskey
tastings.
“We got thrown a COVID curveball,” said Stephen, who will cohost a postgame wine tasting with former Giants reliever Jeremy Affeldt on Saturday evening. “But it’s going to be pretty cool.”
How do you do a virtual tasting? The nonprofit is making sure that the Firestone beers, Wente wines and Heaven Hill whiskeys being tasted are listed on their website and widely available. So participants can order flights online at the organization’s website or pick up spirits at local stores, log onto the fundraiser, taste some adult beverages and bid on items like a Matt Chapman or Buster Posey signed bat, a Yao Ming winery bottle, gameused items from Piscotty and Chapman, autographed items by Randy Johnson, Robb Nen or Mookie Betts or even — for that magical day when fans are allowed back into games — an 18person suite at the Oakland Coliseum.
“We’re finding a way to do it,” Mike said.
Finding a way has been Mike’s push since his wife died in May 2018, just 16 months after being diagnosed. The family’s plight became well known, with Stephen, who’s from Pleasanton, receiving a trade to the A’s from St. Louis after the 2017 season in part so he could spend more time with his mother.
After Gretchen’s death, Mike, an IT project manager at Lawrence Livermore National Lab, launched his foundation, beginning a methodical, organized approach to making inroads to a cure. In the past two years, he has raised $750,000, attended conferences in Glasgow and Perth, met countless experts, listened to hundreds of research reports and learned more about the challenges.
“We don’t have a test for ALS,” Mike said. “We don’t have biomarkers.”
The first goal toward curing ALS is being able to diagnose the disease with a biomarker test before it sets in, something not currently possible. To that end, the money the Piscotty foundation has raised has gone to help fund three computerbased research models that look for ALS biomarkers. One is a longterm longitudinal model through the Livermore Labs Foundation, in which computational biologists crunch data markers of ALS patients looking for patterns. The other two involve a genetic model, looking at DNA, and a physicsbased model looking to determine what starts the disease and what causes it to progress.
“We use our research council of ALS experts to decide where our dollars are best spent,” Mike said. “If we can figure out the disease mechanism, there’s a good chance we can find a cure.”
The rarity and lethality of ALS pose a problem. The harsh reality is that about 6,000 Americans are diagnosed every year with the disease, but without a cure, there is not a large enough pool of living patients to give drug companies a profit incentive. Right now, vast resources are going into a different medical issue: finding a vaccine for the coronavirus and understanding more about COVID19. Consequently, the message about other deadly diseases might be lost.
“That’s a very real concern,” Stephen said. “It’s a challenge today because priorities have shifted a bit, and rightfully so in a pandemic.”
Mike is concerned about the economic fallout hurting fundraising efforts, though he notes that some people are saving money on bigticket items like vacations (he has, to his dismay, saved a lot of funds he previously used to follow the A’s around the country to watch Stephen play and has, subsequently, increased his personal donations).
“What’s been really frustrating for the ALS community (about coronavirus) is seeing that vaccines are being rushed to market,” Mike said. ALS patients “are dying but they can’t get access to drugs to slow the disease that are currently in trials.”
Visibility helps raise funds and awareness, which is one of the goals of this weekend’s fundraiser. The A’s have strongly supported the foundation since its inception. The 49ers, rocked by the ALS death of Dwight Clark, have donated items for auction. The Giants also have been supportive; the Piscotty family is close with Brandon Crawford’s family, and the Crawfords have helped raise funds with spring training golf tournaments.
There is hope that someday soon Major League Baseball will adopt a Lou Gehrig Day, the Hall of Famer whose name was once shorthand for ALS. It would be logical for the Yankees to take the lead on that (could it help that the Yankees now have a connection to the Piscotty family through Gerrit Cole’s wife — and Brandon’s sister — Amy Crawford?) but it hasn’t happened yet.
Mike Piscotty has a lot of ideas about moving forward. For now, he hopes A’s and Giants fans will swirl and sip and listen to Stephen Piscotty and Affeldt swap stories over wine, former Giants pitcher Dave Dravecky rate whiskeys and A’s broadcaster Ray Fosse reminisce about another ALS victim, Catfish Hunter. And that the fans will bid.
“He’s all in,” Stephen said of his father. “He’s put a very large portion of his life’s effort into this. He’s not a doctor, but he knows how to move and shake things.”
Mike thinks of the big projects in which he has been involved in the past. Walls covered with sticky Postits with todos and goals. And always, on challenging projects, there’s one Postit that says: We need a miracle here.
“I am used to handling hard, unstructured problems,” he said. “We didn’t let the need for a miracle stop us.”
Even in a pandemic, you keep going.