Neil Alexander Raised $1.3 Million to Help Fight ALS – and Now Has a Research …
February 5, 2015 - als
Neil Alexander was only 46 years aged when he got a harmful news.
Doctors told him he had Amyotrophic Lateral Sclerosis, or ALS, a on-going neurodegenerative illness with no heal or diagnosis and an normal life camber of dual to 5 years after diagnosis.
“I knew that was Lou Gehrig’s illness and we know he died from it, yet we kind of collected myself and we pronounced to a doctor, ‘OK, good what do we do now?’ ” Alexander, now 49, of O’Hara, Pennsylvania, tells PEOPLE.
“The alloy responded, ‘I like to tell people to do what they love,’ and that was only distinguished to me,” he says. “The law is there’s zero we can do. It was a abrasive situation.”
Worse was when he went home and told his wife, origination certain their dual children weren’t in a house.
“We spent dual weeks only reeling, job family, crying, perplexing to have private conversations so a kids couldn’t hear,” says Alexander, a former lawyer.
But as he began reading some-more about ball good Lou Gehrig, his opinion began to change – generally when he watched Gehrig’s farewell to ball speech in Jul 1939, where he admitted himself “the luckiest male on a face of this earth” after removing a harmful diagnosis.
“His whole debate was thanking people for a impact they had on his life,” he says. “It’s truly a many surpassing countenance of thankfulness that a universe has ever seen.”
So he motionless to adopt that same opinion as his possess – starting with combining a substructure to assistance other families struggling with a disease. All he indispensable was a name for it.
“I was walking around a residence with my Gehrig autobiography and kept observant to my wife, ‘Did we know Gehrig did this and that?’ ” he says. “One night she was origination cooking and said, ‘We should call a substructure Live Like Lou‘ “.
Pictorial Parade / Getty
Live Like Lou Becomes Reality
Since a pregnancy in 2011 – a same year as his diagnosis – Alexander has lifted $1.3 million, with a income going toward medical research, college scholarships for children of people diagnosed with ALS and assisting some-more than 100 ALS families with losses like promulgation kids to camp, removing them cheerleading lessons and shopping a dress for a prom.
On Thursday, a University of Pittsburgh announced a origination of a Live Like Lou Center for ALS Research, that will concentration on building treatments and potentially a heal for a disease.
Neil and his wife, Suzanne, have affianced to lift $2.5 million over a subsequent 5 years for a center, that Pitt will match.
“The grant Neil’s perplexing to foster might not assistance him, yet can assistance his kids and other people’s kids so they have to be everyone’s heroes,” Peter Strick, executive of a University of Pittsburgh’s Brain Institute, that is home of a new center, tells PEOPLE. “His loyalty to removing things finished to make a disproportion is only remarkable.”
The Alexanders will also continue a work of their foundation.
“Live Like Lou is assisting us turn improved versions of ourselves,” says Suzanne, 47, a stay-at-home mom. “It’s a plea that we can’t get absolved of or stop, yet we’re training how to work with it and do large things.”
The foundation’s goal is three-fold: lifting recognition of ALS, that they do by Neil’s vocalization engagements; appropriation investigate for a therapy or heal for a disease; and assisting patients families’ with losses and a grant module for their children called a ‘Iron Horse Awards,’ that are named after Gehrig.
For Missie Church’s family, Live like Lou was a “beacon of light in a dim time,” she tells PEOPLE.
The substructure paid for her daughter’s transport softball and basketball stay and another’s cheerleading costs about a year ago.
Courtesy Missie Church
“In such a terrible time they brought joy,” says Missie, 49, of Chester, Pennsylvania, whose husband, Damon, was diagnosed with ALS in Oct 2012.
“We still got to see a kids do a things they wanted to do even yet their father was diagnosed with this horrific disease,” says Church, who owns a beauty salon.
Even today, articulate about what he did for them brings tears.
“There was something on Facebook that he helped dual families that couldn’t means Thanksgiving dinner,” she says. “He sent a children income for a dish and for a Christmas meal. He only thinks of small sum of how they could be spiteful and tries to make their life better.”
Neil and Suzanne feel as yet their classification is training a lot of critical lessons to their possess children, now 13 and 11 years old, as well.
“When life gives we something unequivocally hard, we don’t have to twist adult in a corner, we can select to cut a new trail for yourself,” says Suzanne.
No Bucket List
Meanwhile, a Alexanders are doing all they can to make a many of a time they have left together.
The initial dual years after Neil’s diagnosis, they trafficked to Europe and via a United States. Now that he is henceforth in a wheelchair and, as of 3 months ago, his voice has begun to be affected, it’s a lot some-more formidable to do things – yet he doesn’t let that get him down.
“We demeanour brazen to holding some-more automobile trips,” says Neil. “I have a encumber outpost that allows me to expostulate my wheelchair right in.”
While people continue to ask him if he has a bucket list, he says ‘No’ – since he already has all he wants.
“I was advantageous to find a lady of my dreams, have dual good kids, live in a good community, and that’s unequivocally all we was looking for,” Neil says.
He – like Lou – chooses instead to be beholden for a life he has.
“I wish it would go on until we was 85, yet it doesn’t demeanour like that’s going to happen,” Neil says. “I’m so elegant that I’ve had so most good fortune.”
More Heroes Among Us:
Twin Sisters Inspire Hope for Those with Epilepsy
High School Teacher Saves Her Husband’s Life with Help from Her Students
Know a hero? Send suggestions to firstname.lastname@example.org. For some-more moving stories, review a latest emanate of PEOPLE magazine