After Alexander was diagnosed in 2011, he decided to "Live like Lou" Gehrig and cherish what he had

By Alexandra Zaslow
February 05, 2015 02:45 PM
Credit: Duane Rieder

Neil Alexander was just 46 years old when he got the devastating news.

Doctors told him he had Amyotrophic Lateral Sclerosis, or ALS, a progressive neurodegenerative disease with no cure or treatment and an average life span of two to five years after diagnosis.

“I knew that was Lou Gehrig’s disease and I know he died from it, but I kind of collected myself and I said to the doctor, ‘OK, well what do I do now?’ ” Alexander, now 49, of O’Hara, Pennsylvania, tells PEOPLE.

“The doctor responded, ‘I like to tell people to do what they love,’ and that was just striking to me,” he says. “The truth is there’s nothing you can do. It was a crushing situation.”

Worse was when he went home and told his wife, making sure their two children weren’t in the house.

“We spent two weeks just reeling, calling family, crying, trying to have private conversations so the kids couldn t hear,” says Alexander, a former lawyer.

But as he began reading more about baseball great Lou Gehrig, his attitude began to change – especially when he watched Gehrig’s farewell to baseball speech in July 1939, where he proclaimed himself “the luckiest man on the face of this earth” after getting the devastating diagnosis.

“His entire speech was thanking people for the impact they had on his life,” he says. “It’s truly the most profound expression of gratitude that the world has ever seen.”

So he decided to adopt that same attitude as his own – starting with forming a foundation to help other families struggling with the disease. All he needed was a name for it.

“I was walking around the house with my Gehrig biography and kept saying to my wife, ‘Did you know Gehrig did this and that?’ ” he says. “One night she was making dinner and said, ‘We should call the foundation Live Like Lou‘ “.

Live Like Lou Becomes Reality

Since its inception in 2011 – the same year as his diagnosis – Alexander has raised $1.3 million, with the money going toward medical research, college scholarships for children of people diagnosed with ALS and helping more than 100 people affected by ALS and their families with expenses like sending kids to camp, getting them cheerleading lessons and buying a dress for the prom.

On Thursday, the University of Pittsburgh announced the creation of the Live Like Lou Center for ALS Research, which will focus on developing treatments and potentially a cure for the disease.

Neil and his wife, Suzanne, have pledged to raise $2.5 million over the next five years for the center, which Pitt will match.

“The science Neil’s trying to promote may not help him, but can help his kids and other people’s kids so they have to be everyone’s heroes,” Peter Strick, director of the University of Pittsburgh’s Brain Institute, which is home of the new center, tells PEOPLE. “His dedication to getting things done to make a difference is just remarkable.”

The Alexanders will also continue the work of their foundation.

“Live Like Lou is helping us become better versions of ourselves,” says Suzanne, 47, a stay-at-home mom. “It’s a challenge that we can’t get rid of or stop, but we’re learning how to work with it and do big things.”

The Mission

The foundation’s mission is three-fold: raising awareness of ALS, which they do through Neil’s speaking engagements; funding research for a therapy or cure for the disease; and helping patients families’ with expenses and a scholarship program for their children called the ‘Iron Horse Awards,’ which are named after Gehrig.

For Missie Church’s family, Live like Lou was a “beacon of light in a dark time,” she tells PEOPLE.

The foundation paid for her daughter’s travel softball and basketball camp and another’s cheerleading costs about a year ago.

“In such a terrible time they brought joy,” says Missie, 49, of Chester, Pennsylvania, whose husband, Damon, was diagnosed with ALS in October 2012.

“We still got to see our kids do the things they wanted to do even though their dad was diagnosed with this horrific disease,” says Church, who owns a beauty salon.

Even today, talking about what he did for them brings tears.

“There was something on Facebook that he helped two families that couldn’t afford Thanksgiving dinner,” she says. “He sent the children money for a meal and for a Christmas meal. He just thinks of little details of how they could be hurting and tries to make their life better.”

Neil and Suzanne feel as though their organization is teaching a lot of important lessons to their own children, now 13 and 11 years old, as well.

“When life gives you something really hard, you don’t have to curl up in a corner, you can choose to cut a new path for yourself,” says Suzanne.

No Bucket List

Meanwhile, the Alexanders are doing everything they can to make the most of the time they have left together.

The first two years after Neil’s diagnosis, they traveled to Europe and throughout the United States. Now that he is permanently in a wheelchair and, as of three months ago, his voice has begun to be affected, it’s a lot more difficult to do things – but he doesn’t let that get him down.

“We look forward to taking more car trips,” says Neil. “I have a handicap van that allows me to drive my wheelchair right in.”

While people continue to ask him if he has a bucket list, he says ‘No’ – because he already has everything he wants.

“I was fortunate to find the woman of my dreams, have two great kids, live in a great community, and that’s really all I was looking for,” Neil says.

He – like Lou – chooses instead to be grateful for the life he has.

“I wish it would go on until I was 85, but it doesn’t look like that’s going to happen,” Neil says. “I’m so appreciative that I’ve had so much great fortune.”

UPDATE: Unfortunately, Neil passed away on Tuesday, March 24, just six weeks after announcing the creation of the Live Like Lou Center at the University of Pittsburgh’s Brain Institute.

“We at the Foundation are all so sad that such a rich and giving life has ended, but we are all so fortunate to be playing a role in the legacy that will continue,” Maxwell King, president and CEO of The Pittsburgh Foundation, told Trib Live.

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