How Gehrig inspired Bucs fan with same fate

After ALS diagnosis, Neil Alexander started LiveLikeLou with wife before passing in '14

June 3rd, 2021

PITTSBURGH -- The story of the late Neil Alexander is interwoven with that of Lou Gehrig in more ways than one.

Neil lived in Pittsburgh with his wife, Suzanne, after the two moved from Los Angeles in 1994 -- a homecoming of sorts, as Neil’s parents were born and raised in the city before moving their family to Columbus when he was young. Suzanne gave birth to their son, Patrick, and their daughter, Abby. Neil was an executive at a wealth management firm in the Steel City. He had a great life.

However, Pittsburgh is also where Neil would receive a diagnosis that too many are given, including Lou Gehrig: He had amyotrophic lateral sclerosis (ALS), a degenerative disease with a 100% fatality rate. It is a disease of one loss after another -- the ability to stand, the ability to wash one’s body or use the bathroom by oneself, the ability to speak, the ability to eat, the ability to breathe.

After he received his diagnosis, Neil, a baseball fan, dug into the life of Gehrig, who battled ALS and gave a famous speech marked by courage and gratefulness despite the disease that would be his death sentence, remarking: “I consider myself to be the luckiest man on the face of the earth.”

“My husband was inspired, [because] Lou Gehrig knew he was going to die and he knew he was going to die a horrible death, and he called himself lucky,” Suzanne said.

So he and his wife started LiveLikeLou in 2012, a grassroots organization that aims to find a cure for ALS and to give back to those diagnosed with ALS. The organization has raised millions of dollars. It helped create the LiveLikeLou Center for ALS Research at the University of Pittsburgh’s Brain Institute. It has provided grant after grant to ALS patients to afford the care and tools they need.

Neil died from complications of ALS in 2015, yet LiveLikeLou continued to grow beyond what he and Suzanne could have ever expected. However, it’s also a reminder that this disease is still out there and still taking good people in their prime.

“I didn’t want any of this,” Suzanne said. “I didn’t want my husband to get the disease. I didn’t want to be the face of a disease. I didn’t want him to die the way that he died. Now, I do this because I hate ALS. I want to get rid of it.”

In addition to Neil’s family and the Pittsburgh community, LiveLikeLou has received an unbelievable amount of support from Phi Delta Theta.

Neil joined Phi Delta Theta while attending law school at the University of Pittsburgh. The fraternity has been home to many names in baseball, such as John Mozeliak, Ron Cey, Mike Timlin and, yes, Gehrig. Gehrig was a brother of the chapter at Columbia University, where he was a fullback on the football team and a two-way player on the baseball team before heading one borough over to make a name for himself with the Yankees.

The Phi Delta Theta fraternity merged with LiveLikeLou in 2018 to form the LiveLikeLou Foundation, effectively taking the grassroots organization in Pittsburgh and turning it into a national non-profit.

“I stand on the shoulders of 170,000 Phi Delts every single day,” Suzanne said. “They raise money for LiveLikeLou, they serve on our board, they volunteer for ALS families. They are an amazing partner [to help us go] national.”

Phi Delta Theta will join Suzanne and the LiveLikeLou Foundation at PNC Park on Thursday, when the Pirates will mark MLB’s inaugural Lou Gehrig Day with an on-field ceremony. It will also include representatives from the ALS Association of Western Pennsylvania as well as Permobil, who will present a wheelchair to Dan Wingerter, an Erie native who has lived with ALS since 2019.

That is no small gesture, as this is no regular wheelchair. It is a high-powered machine with a ton of useful accessories to help ALS patients live out their days with a sense of dignity, which includes aspects as vital as mobility and as minute as not having your children look down at you while you’re sitting with them.

“ALS is a freight train through a person’s life,” Suzanne said. “It takes away their dignity, their money and their mobility all at the same time. And Permobil is a hero in this story with what they do for ALS patients.”

Brett Schoenecker, an ALS patient in Western Pennsylvania, and his wife, Jeannine, will throw out the first pitch at PNC Park on Thursday. Neil got the chance to do that in 2012, wearing a jersey with “” across the back and pitching to Pirates legend Steve Blass, who has been a family friend since.

It was a dream come true for the longtime Pirates fan, who revered Roberto Clemente and who never missed a home opener from the time he and Suzanne moved to Pittsburgh in 1994 until ‘14, when the progression of ALS prevented him from going.

“Our kids did, too. We’d drag our babies with us,” Suzanne said. “He was a huge Pirates fan. It was one of his great joys in life.”

Blass is far from the only Pirate who has been a friend of the Alexanders and the LiveLikeLou Foundation. Suzanne said former manager Clint Hurdle became a family friend. Pirates Charities put LiveLikeLou front and center in some of its fundraising drives.

With a new front office comes new connections to make for Suzanne, who serves as the director of the board for the foundation, and she looks forward to working with them over the coming Lou Gehrig Days and beyond to raise funds for patients and research.

“I hope to build that kind of relationship with Travis and Jacque and their team, because we started in Pittsburgh and we’re staying in Pittsburgh,” Suzanne said. “ALS should be the cause of Major League Baseball, and I’m thrilled. Lou Gehrig is finally getting his day, and the Pirates have been with us from the beginning.”

And though Neil met the same fate as Gehrig, facing a disease that slowly took away his abilities and eventually his life, he still considered himself a lucky man and created a legacy that endures today -- just as Gehrig did.

“My husband’s like, ‘It’s not my kids. It’s not my wife. I live in Pittsburgh. So I’m lucky, too,'" Suzanne said.