Raising Awareness and Working to Make a Difference

Raising Awareness and Working to Make a Difference

by Christy Cabrera Chirinos

CORAL GABLES, Fla. – Jonathan Anderson grew up watching Hurricanes baseball with his mother.

As often as she could, Martha Anderson would bring her boy to Mark Light Field and together, the two would take in all the sights and sounds around them as the Miami Hurricanes worked to get back to the College World Series.

Before long, 7-year-old Jonathan struck up a friendship with former Hurricanes pitcher Gus Gandarillas, who noticed the youngster’s near-constant presence at Miami’s games. Gandarillas eventually took Anderson onto the field, taught him to pitch and introduced him to legendary Miami coach Ron Fraser.

That introduction paved the way for Anderson to move from his seat in the stands with Martha to the Hurricanes’ dugout, where he served as a bat boy during Fraser’s final season at Miami.

It was a magical experience Anderson hasn’t ever forgotten, one he says shaped him into the person he is today and one that he’s reminded of when he comes to The Light now as Miami’s director of player development.

Every day, Anderson will look up into the stands where he sat with his mother and smile, imagining what it would mean to Martha to see this next step of his Miami journey.

“It always gives me that extra jolt, not that I need it,” Anderson said with a smile. “But it always gives me that extra jolt when I’m here because I always think of her.”

This weekend, Martha Anderson will again be front and center in Anderson’s mind, particularly since the Hurricanes are set to host their first Strike Out ALS Game on Friday when they take on Duke in a key ACC matchup.

Martha Anderson was diagnosed with ALS – commonly known to most as Lou Gehrig’s disease – in September of 2019. She passed away less than a year later and today, Jonathan Anderson is determined to do his part to help raise awareness about the disease and its devastating impact on patients and their families.

“Lou Gehrig had this disease nearly a hundred years ago and while we have made some progress, there’s no cure for it,” said Anderson, who also lost his grandfather, Jack Meyers, to ALS. “There have been some improvements in terms of people that have it extending their life, but not necessarily extending the quality of their life, so to speak. It is a very challenging and tough disease. So, the more we can raise awareness and raise funds for it, the better because hopefully, we can find a cure for it long-term.”

Anderson isn’t the only Hurricane whose family has been affected by ALS.

Paul DiMare, the father of head coach Gino DiMare and an 18-year member of the University of Miami Board of Trustees, was diagnosed with ALS in 2021. He passed away in December.

Before his death, though, Paul DiMare had made it one of his personal missions to try and raise both funds and awareness for not only ALS, but a host of other neurological disorders including Alzheimer’s, Parkinson’s Disease, multiple sclerosis, and spinal cord injuries.

His hope had been to create an institute that would bring together doctors and scientists to cure what he referred to as “the incurables” and better the lives of millions of patients who suffer from those neurological disorders.

His family, including his son Gino, is determined to try and carry out that mission and Friday’s game is one part of that process.

“He was working very hard to try and bring awareness. In his mind, if we were going to move the needle at all, we needed to learn as much as we could,” said Gino DiMare, whose mother Carole also died of ALS. “He was starting to get very educated. He hadn’t left his house in years, but he was on the phone or on his computer. He couldn’t move much at the end, but he could talk still, and he was working hard to find a way, in his mind to, to bring all the incurable diseases [to the forefront] so that would make a punch to this whole thing and make an impact.”

Paul DiMare understood there was a challenge on that front.

While most Americans may know of Lou Gehrig’s battle with the disease, ALS is rare. Roughly 1 in 400 people will develop it in their lifetimes and there are generally just 30,000 people living with ALS in the United States at a given time, according to statistics from the ALS Therapy Development Institute in Watertown, Massachusetts.

It is a disease which can often be tough to diagnose because many of its symptoms can mirror other conditions. Once symptoms appear, however, and a diagnosis is confirmed, most people with ALS live between 3-5 years depending on how quickly the disease progresses.

That progression is challenging, with patients often losing their ability to move, speak and breathe freely on their own.

Making it even more difficult for patients and their families is the fact that while ALS impacts the body’s muscular and neurological systems, it does not always affect a patient’s cognitive abilities.

Both Martha Anderson and Paul DiMare were aware of the impact ALS had on their bodies, physically, and understood what they were experiencing.

That, their sons said, made the disease even more cruel.

“You lose the ability to do things you’ve done your entire life that you take for granted: going for a walk, holding a pen, signing your name, feeding yourself. You can’t even hold a fork or a spoon…all these basic functions, you lose the ability to do all that,” Anderson said. “But your mind stays perfectly sharp. You watch yourself go through all that and you know what’s happening. You understand what’s happening, which I think is another really difficult aspect of the disease.”

Said Gino DiMare, “Both of our parents, almost from the time they were diagnosed to the time they passed away, was about the same – 20 months. And during that time, it was just a total shutdown of the body. But the brain’s still intact. They knew exactly what was going on.”

At this point, there is no known cure for ALS and no treatment that can effectively slow the disease’s progression. That’s part of what Anderson, DiMare and the rest of the ALS community hope to change.

The Hurricanes aren’t alone in their fight.

Last season, during Miami’s series at Georgia Tech, the Yellow Jackets hosted their own ALS awareness game in honor of former Tech pitcher Jim Poole, who suffers from ALS.

Poole was at the game and was recognized during an emotional ceremony that struck a chord with Anderson and DiMare.

Now, Poole and every other patient with ALS will be part of Miami’s efforts to raise awareness about the ongoing efforts to find a cure for the disease.

“This is so much more meaningful and so much bigger than baseball,” said Hurricanes pitcher Alejandro Torres. “The fact that we’re able to dedicate this game to striking out ALS, I mean, I think that’s just the beginning for us. I think we should definitely have more games like this, and we should definitely create more opportunities to raise awareness and [do] fundraising to support the cause. At the end of the day, any sickness, no matter what it is, but specifically ALS, is detrimental to families…If we’re able to do our part in the community, stay together as a family and serve this philanthropic mission that we’re doing, that’s just very fulfilling.”

And while Martha Anderson and Paul DiMare won’t be able to see the Hurricanes’ efforts on Friday night, their sons believe they’d be proud, especially given how much both of them loved Miami’s baseball program.

“I’m going to be thinking about her a lot, but I think she would be very happy because it represents her father, her, and everybody who has ALS,” Jonathan Anderson said. “When she was diagnosed with ALS, she was very well aware of how it was going to go and what was going to happen. She often made comments to me about how there was no cure…So I think she’d be very happy knowing we’re doing everything we can to try and improve the lives of those who have ALS and hopefully, finding a cure.”

Said Gino DiMare, “I think it’d mean the world to him…Hopefully fans will get an understanding of the impact this can have on families and what it is.”

To learn more about ALS and University of Miami ALS Center, please visit miami-als.org.