O'Hara man continues to work, coach despite Lou Gehrig's disease diagnosis

It felt like carpal tunnel syndrome was developing in his hands, so two years ago, Neil Alexander used his elbow instead to break a wooden board and receive his black belt in tae kwon do.

The odd sensation Mr. Alexander, 46, of O'Hara, felt wasn't carpal tunnel. In June 2011, he was diagnosed with amyotrophic lateral sclerosis.

ALS, more commonly known as Lou Gehrig's disease after the baseball legend who died from it, destroys motor neurons while leaving the mind intact. It's also called the glass coffin.

For the average ALS patient, the disease causes paralysis and then death within two to five years. Mr. Alexander, who with his wife Suzanne has a 10-year-old daughter and an 8-year-old son, decided soon after his diagnosis that he would try to turn his bad news into something good.

The Alexanders created LiveLikeLou.org, a charity to raise funds for research and patient support while raising awareness of ALS and advocating for progress on the disease and its treatment.

Young Brothers Tae Kwon-Do Institute -- where Mr. Alexander and his son, Patrick, received their black belts -- heard about Mr. Alexander's disease and his foundation. The company offered to hold a breakathon.

On a recent weekend morning in the institute's Aspinwall studio, a few dozen kids and their parents broke boards for ALS. With every wooden board split in two by hands, elbows or feet, a donation was sent to LiveLikeLou.org.

"He's taken such a horrible situation, but look how he's bringing people together," said Carlene Bensch of West View as she watched her children join in the breakathon.

The official launch of LiveLikeLou.org was in March, when the Alexanders turned their 20th wedding anniversary into a kick-off party to raise money for the foundation.

The organization could raise maybe $50,000 in total, then hand out $5,000 a year, Mr. Alexander figured initially.

He underestimated. By the kickoff party, the foundation had raised $250,000, with $20,000 going to the Western Pennsylvania Chapter of the ALS Association for patient support.

The foundation had raised about $300,000 by the end of May, Mr. Alexander said.

That's a big deal, said Grant Oliphant, president and CEO of The Pittsburgh Foundation. LiveLikeLou.org is a fund established with the foundation.

"It's very rare for us to see a campaign like this that is getting contributions from dozens upon dozens of people to grow this quickly," he said.

It's still growing and Mr. Alexander, who continues working on a flexible schedule as director of corporate services for Downtown-based financial management firm Hefren-Tillotson Inc., is moving the foundation forward.

In May, Mr. Alexander, along with other ALS advocates from Western Pennsylvania, traveled to Washington, D.C. to lobby Congress for more support for the disease, which is diagnosed in more than 5,000 Americans annually.

They were there to encourage Congress to continue running the national ALS registry, to fund research into the disease and to modernize some patent laws that could aid the research and development of ALS drugs.

Mr. Alexander also traveled in May to Harrisburg with patients and family members to urge the state legislature to fund programs for ALS patients and their families in Pennsylvania.

"It is the stories of people like Neil that carry the most weight with the legislators," said Merritt Holland Spier, executive director for the Western Pennsylvania ALS group, who also lobbied Harrisburg. "It's hearing from people who are living with the disease."

Back in Pittsburgh, Mr. Alexander and his wife stay busy attending, organizing and pushing for events that raise money for their foundation.

Mr. Alexander gives frequent talks about ALS, with the goal of raising awareness about a disease that many victims face in private.

He's also lending his ALS-afflicted body to science. Mr. Alexander is participating in two research studies -- one for a drug to slow the progression of the disease and another to create a diagnostic test for ALS.

Even at his son's Little League games, there are reminders of Lou and ALS. Mr. Alexander has, for the past few years, helped coach his son's team and this year, the head coach arranged for the Fox Chapel team to be called the Yankees.

The uniforms bear the name of Mr. Alexander's foundation, and his son, Patrick, wears No. 4, Gehrig's number.

"Our life is going on, but it's also very ALS-centric, but in a good way," he said.

He can feel his disease progressing -- he clears his throat frequently, the muscles in his hands are atrophying and he can feel the muscles twitching in his legs.

It will only get worse, but Mr. Alexander plans to live out the remainder of his life with a purpose -- to be a part of turning the disease into a chronic condition, rather than a death sentence.

"I kind of feel like once you are diagnosed, there's this boulder," Mr. Alexander said. "You have to drop a shoulder, and you have to lean into the boulder, and while you can, can I help move the boulder two feet?

"Because eventually, there's a finish line. We just don't know where it is. Someone's going to cause it to cross the finish line. And if I can help move it two feet, hopefully we are two feet away from the finish line. We are probably not, but someone is going to cross it."

At the Young Brothers Tae Kwon-Do studio in Aspinwall, Brianne Norris doesn't just teach her young students about technique and form. She teaches them to say ma'am and sir. Her students learn to show respect to their elders and they learn the tenets of tae kwon do.

One of them is "indomitable spirit."

Lou Gehrig had it, Ms. Norris said as the breakathon got underway. So does Neil Alexander.

Knopp Biosciences, based on the South Side, is researching possible treatments for ALS while it awaits the results of a study on dexpramipexole, a drug that could slow the progression of the disease.

Click here to see the story that ran in today's Pittsburgh Post-Gazette.

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This story originally appeared in The Pittsburgh Press. To subscribe: http://old.post-gazette.com/trypress/ Kaitlynn Riely: kriely@post-gazette.com. First Published June 18, 2012 8:15 PM


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