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While there is still unfortunately a lot that the scientific world does not know about amyotrophic lateral sclerosis (ALS), they’re learning more and more thanks to the efforts of the ALS CURE Project.
Longtime Lawrence Livermore National Laboratory IT architect Mike Piscotty and son Stephen Piscotty, the former Oakland Athletics outfielder and Amador Valley High School alumnus, founded the nonprofit five years ago after the death of wife/mother Gretchen Piscotty — motivated by her hope that “no one would have to suffer my fate.”
“Unfortunately, some of the brightest ALS scientists in the world have not been able to find the basic foundations needed to cure this illusive disease. We don’t know why the disease starts, or why it progresses, and we still do not have a test or biomarker for the disease,” Mike Piscotty told me in a recent interview ahead of the nonprofit’s upcoming fourth annual Country Fest fundraiser.
Any such target is vital for the pharmaceutical industry, and advancements toward ALS treatments and a cure — and thus has been the primary focus for the ALS CURE Project, its partners at LLNL, the Livermore Lab Foundation and around the world.
“We are optimistic that a target will be found for ALS in the near future and that drug companies will create therapies for ALS,” Mike said. “It is a true honor to work with these brilliant, empathetic and driven researchers as we work as an international team for this noble cause.”
The Piscottys’ story made national headlines in 2017, when the St. Louis Cardinals traded Stephen to the A’s so he could be closer to his mom in Pleasanton after she was diagnosed with ALS — a ruthless, incurable disease with its own lasting connection to baseball via one of its most famous early patients, Lou Gehrig.
Heart strings were again pulled among baseball fans in May 2018 when Stephen hit a memorably emotional home run in his first game back following Gretchen’s death. The former Foothill High School secretary and mother of three sons was just 55 years old.
But the story was far from over: Mike and Stephen (and Gretchen) made sure of that.
“Our family and friends guided Gretchen through this journey in a beautiful and caring way. Gretchen’s bravery in the face of this disease was why we felt compelled to honor her wishes,” Mike said, reflecting on the decision to form the all-volunteer nonprofit to support the scientific fight for therapies and a cure.
“ALS is a progressive disease that methodically robs a person of the ability to move their muscles, eventually becoming trapped in their body all the while the brain functions normally,” he added. “Patients live on an average between one and five years, depending on the rate of their disease progression. Unfortunately, ALS is currently a death sentence, leaving patients and their families clinging and hoping to cherish every day.”
That’s the harsh reality that the ALS CURE Project and its partners are working to improve.
The organization has found its niche raising money and awareness to support ALS-related projects and initiatives in America and abroad in places like Italy, Slovenia and England.
“We’re working really hard to get the international research community to work together,” Mike told me, pointing in particular to their support of the ALS Innovation Symposium, bringing brilliant minds of science and medicine together to converse and collaborate in ways they likely would not have before.
Mike likens the problem-solving strategy to his old days coaching youth baseball: “When you’ve got 12 Little Leaguers, you don’t need 12 shortstops.”
The fundraiser over back-to-back days at the end of September is earmarking money for two such aspects of the fight: drug repurposing and genetic combinations.
“Funds from these events will fund an important an drug repurposing project at LLNL and Stanford to use LLNL supercomputers to run Machine Learning models on ALS patient’s health records to identify FDA approved off target (not currently used for ALS) drugs that individually or combination slow the progression of the disease and give ALS patients precious extended days,” Mike said.
Of work on genetic combinations, he explained, “Today, less than 10% of ALS cases are attributed to known ALS genes leaving more than 90% to be known as sporadic aka unknown … The goal is to determine if combinations of genes are causal for ALS and other related neurological diseases such as Parkinson’s disease. This will be a major scientific advance that will then lead to drugs that can stop the disease progressive and may even halt the onset of the disease.”
Country Fest to Cure ALS is centered on performances by Nashville recording artists Jason Blaine, Josh Melton and Jennifer Grant.
The opening event will be Sept. 27 from 5-10 p.m. at the Blackhawk Museum in Danville, a “bite night” and concert to marry entertainment and fundraising. More than a dozen restaurants from the greater Tri-Valley and Brentwood are participating, including Oyo, Chianti’s, Blue Agave and Gay Nineties from Pleasanton.
On the next afternoon, Sept. 28 starting at 2 p.m., seven hours of country music and revelry (with local artists Toree McGee and the Carousel Cowboys) joining the three Nashville performers on the bill) will follow at Hannah Nicole Winery in Brentwood.
Mike himself has a stronger connection to East Contra Costa County these days, now living in Brentwood and Discovery Bay — saying he’s lucky to have found “a second angel in my life” in new wife Donna. He still spends plenty of time visiting family and friends in the Tri-Valley, plus he’s coming up on 40 years of working at the lab. (His son Nick lives in the family’s longtime house in Pleasanton.)
VIP and general admission tickets to the fourth Country Fest to Cure ALS remain available, as well as sponsorship packages. Visit alscure.org to learn more.Â
Editor’s note: Jeremy Walsh is the editorial director for the Embarcadero Media Foundation’s East Bay Division. His “What a Week” column is a recurring feature in the Pleasanton Weekly, Livermore Vine and DanvilleSanRamon.com.
