Country Fest to cure ALS: Piscotty's nonprofit continues fight against 'illusory disease'

Although there is unfortunately still much unknown in the scientific world about amyotrophic lateral sclerosis (ALS), thanks to the efforts of the ALS CURE project, more and more is being learned.

Longtime Lawrence Livermore National Laboratory IT architect Mike Piscotty and his son Stephen Piscotty, a former Oakland Athletics outfielder and Amador Valley High School graduate, founded the nonprofit five years ago after the death of their wife and mother Gretchen Piscotty – motivated by their hope that “no one would have to suffer my fate.”

“Unfortunately, some of the world's brightest ALS researchers have failed to find the fundamental insights needed to cure this elusive disease. We don't know why the disease starts or why it progresses, and we still don't have a test or biomarker for the disease,” Mike Piscotty told me in a recent interview ahead of the nonprofit Country Fest's upcoming fourth annual fundraiser.

Such targets are critical to the pharmaceutical industry and to progress in treating and curing ALS, so they are the focus of the ALS CURE project and its partners at LLNL, the Livermore Lab Foundation, and around the world.

“We are optimistic that a target for ALS will be found in the near future and that pharmaceutical companies will develop therapies for ALS,” said Mike. “It is a true honor to collaborate with these brilliant, compassionate and dedicated researchers as we work as an international team toward 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 mother in Pleasanton after she was diagnosed with ALS – a cruel, incurable disease that has a lasting connection to baseball through one of its most famous early patients, Lou Gehrig.

In May 2018, baseball fans were again moved to tears when Stephen hit an unforgettably emotional home run in his first game since Gretchen's death. The former secretary of Foothill High School 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 have been wonderful and loving in guiding Gretchen through this journey. Gretchen's bravery in the face of this disease is why we felt compelled to honor her wishes,” Mike said, reflecting on the decision to create this nonprofit organization, run entirely by volunteers, to support the scientific fight for therapies and a cure.

“ALS is a progressive disease that systematically takes away a person's ability to move their muscles and eventually leaves them trapped in their body while their brain functions normally,” he added. “Patients live on average between one and five years, depending on how quickly the disease progresses. Unfortunately, ALS is currently a death sentence that leaves patients and their families hoping to enjoy each day.”

This is the harsh reality, and the ALS CURE project and its partners are working to improve it.

The organization has found its niche in raising money and awareness to support ALS-related projects and initiatives in America and abroad in countries such as Italy, Slovenia and England.

“We’re working really hard to get the international research community to collaborate,” Mike told me, citing in particular their support of the ALS Innovation Symposium, which brings together brilliant minds in science and medicine to share and collaborate in ways that probably wouldn’t have been possible before.

Mike compares the problem-solving strategy to his old days as a youth baseball coach: “If you have 12 Little League players, you don’t need 12 shortstops.”

The fundraiser, which will take place over several consecutive days at the end of September, aims to promote two aspects of the fight: the repurposing of drugs and genetic combinations.

“The funds from these events will fund an important drug repurposing project at LLNL and Stanford that will use LLNL supercomputers to run machine learning models on ALS patient medical records to identify FDA-approved off-target drugs (not currently used for ALS) that, individually or in combination, will slow disease progression and give ALS patients valuable longer days of life,” Mike said.

Regarding the work on genetic combinations, he explained: “Today, less than 10% of ALS cases are attributed to known ALS genes, while over 90% are considered sporadic or unknown… The goal is to find out whether gene combinations are the cause of ALS and other related neurological diseases such as Parkinson's. This would be a major scientific advance that will then lead to drugs that can stop the progression of the disease and perhaps even prevent the onset of the disease.”

The Country Fest to Cure ALS features performances by Nashville artists Jason Blaine, Josh Melton and Jennifer Grant.

The inaugural event will be held Sept. 27 from 5 to 10 p.m. at the Blackhawk Museum in Danville, a “bite night” and concert that combines entertainment and fundraising. More than a dozen restaurants from the greater Tri-Valley and Brentwood area are participating, including Oyo, Chianti's, Blue Agave and Gay Nineties of Pleasanton.

The next afternoon, September 28, seven hours of country music and revelry (with local artists Toree McGee and the Carousel Cowboys joining the three Nashville artists on the bill) will follow at 2 p.m. at Hannah Nicole Winery in Brentwood.

Mike himself has a stronger connection to East Contra Costa County today, now living in Brentwood and Discovery Bay. He says he's lucky to have found “a second angel in my life” in his new wife, Donna. He still spends a lot of time visiting family and friends in the Tri-Valley, and he's also worked at the lab for nearly 40 years. (His son, Nick, lives in the family's longtime home in Pleasanton.)

VIP and general admission tickets for the fourth annual Country Fest to Cure ALS, as well as sponsorship packages, are still available. For more information, visit alscure.org.

Editor's Note: Jeremy Walsh is editorial director of the East Bay Division of the Embarcadero Media Foundation. His column, “What a Week,” appears regularly in the Pleasanton Weekly, Livermore Vine and DanvilleSanRamon.com.