Larry Falivena has ALS, but he’s staying positive as he visits all 30 MLB ballparks
Somewhere inside Larry Falivena’s phone, there’s a video where he, his wife and two sons dump ice water on each other’s heads, participating in the Ice Bucket Challenge that swept the country in the summer of 2014. The challenge, a means to raise awareness about the disease amyotrophic lateral sclerosis (ALS), left the entire Falivena family smiling and happy.
“I didn’t really understand what the disease was at the time,” Falivena said.
Three years later, Falivena began to understand for the wrong reason:
He was diagnosed with it himself.
The diagnosis came in August of 2017, at least officially. Falivena had spent the previous three years developing the telltale symptoms of ALS, whose victims live an average of just two to five years longer. Muscle weakness. Muscle twitches. Cramping. When he could no longer train for a race because his left leg had grown weaker than his right, he realized the disease had begun to spread.
ALS is a neurodegenerative, progressive disease that affects nerve cells and motor neurons in the brain and spinal cord. Over time — it varies for every patient — the brain loses its ability to control muscle movement because of the motor neurons’ death. The disease has no cure.
The symptoms that Falivena experienced aren’t exclusive to ALS, though, which is why his diagnosis took so long. Doctors had to rule out everything else.
Here’s the thing, though: Falivena, 51, is turning the disease’s stigma on its head. He’s passionate about staying positive, focusing on the physical abilities he has retained instead of the ones he hasn’t. Otherwise, “that gets pretty depressing,” he says.
That’s part of the reason Falivena took up the challenge of hopping in an RV with his family and visiting every MLB ballpark this summer. He wants to meet people affected by ALS and tell their stories. He’s eager to spread awareness and raise money for a cure. A baseball enthusiast and Atlanta Braves fan since his childhood, Falivena figured a tour of MLB parks would be a fun way to do so.
Falivena’s stop in Kansas City for Friday’s Royals game was No. 19 of 30. The next few, in order: the Colorado Rockies’ Coors Field in Denver, the Mariners’ T-Mobile Park in Seattle and the Giants’ Oracle Park in San Francisco.
He set up a website for supporters to track his journey and donate: challengelarry.org.
The key in this endeavor is that Falivena interacts with those affected by ALS at every ballpark. He works with the ALS Association to identify such people in each city he visits. On Friday, Falivena was to watch the Royals host the Indians with Tony Vick, a 34-year-old with ALS.
The plan began in February, when Larry and his wife, Shana, met with ALS Association CEO Calaneet Balas. They put their heads together and spawned “The Iron Horse Tour,” a nod to New York Yankees legend Lou Gehrig, who earned the “Iron Horse” nickname by playing in a then-record-breaking 2,130 consecutive games. Gehrig was diagnosed with ALS in 1939, cutting his playing career short. He died at age 37.
Falivena has drawn inspiration from Gehrig in a number of ways. The most significant, he’ll tell you, comes from the speech that Gehrig gave in his last appearance in Yankee Stadium. The most famous line: “I consider myself the luckiest man on the face of the earth.”
So at the beginning of the year, Falivena sat down. He asked himself a question.
How do I want to say I spent 2019?
“And it was making memories with my family and having an impact against this disease,” Falivena said. “I get inspiration meeting with other people who are dealing with this disease, and I feel like that’s inspiring to others. So a good day to me is accomplishing those two goals: making memories with my family, and I’m fighting back against this disease. This whole campaign has allowed me to do that.”
Falivena still has his bad days, when he realizes his body isn’t capable of what it once was. Tying his shoes takes concentration. Buttoning his shirt poses a challenge. He has to ask his sons, 14-year-old Quinn and 12-year-old Piersen, to help him get the RV started.
“As a father,” Falivena said, “it’s like, OK, I’m supposed to be taking care of my family. Not the other way around.”
Falivena’s friend of 45 years, Paul Evins, accompanied Falivena in Chicago on Monday because Falivena’s family traveled home to Raleigh, North Carolina. In Chicago, Falivena realized what he calls “one of the great benefits of all of this” when he reconnected with a high school friend with whom he hadn’t talked in some 30 years.
That’s only one of the memories they share. They were college roommates at Florida Southern College in Lakeland, Florida. They’ve golfed together. Now, they’re co-pilots of an RV, where they discuss topics as blithe as passing billboards and as somber as Falivena’s disease.
“It’s been a fun, sad, great experience,” Evins said, “all rolled up in one.”
Still, Falivena says he thinks scientists will produce a cure for ALS in his lifetime. He points to the money the Ice Bucket Challenge raised for the ALS Association — $115 million, according to the New York Times — that he hopes will turn into a cure.
There’s some teeth to that theory. In 2016, research discovered a new gene linked to ALS: NEK1, which scientists count among the most common genes that contribute to the disease.
Falivena is open to the opposite result, though, the one that doesn’t involve a cure in his lifetime. In that case, he says, he wants “to know that I did everything I could for that next generation.”
In a way, that speaks to the impact Falivena is intent on making, cure or not.
“We all know we’re not here forever,” Falivena said. “So in some ways, this diagnosis was a blessing because it’s made me focus on the time that I have. I think it’s had that effect on other people, too. They start to realize, ‘Hey, you know what? I should really be more focused on how I spend my time,’ because you never know how long you’re going to be here.”
This story was originally published July 26, 2019 at 6:06 PM.