Pittsburgh charity makes first gift to child of an ALS patient

One in an occasional series.

Neil Alexander knows first-hand the effect a diagnosis of amyotrophic lateral sclerosis -- more commonly known as ALS or Lou Gehrig's disease -- can have on a family.

Fifteen months ago, Mr. Alexander, a 47-year-old executive at Downtown-based financial management firm Hefren-Tillotson, learned he had ALS, the neurodegenerative disease with no cure and no effective treatment that usually causes death two to five years after diagnosis.

It was, for the O'Hara man who has a 10-year-old daughter and an 8-year-old son with his wife of two decades, "a crushing, crushing diagnosis." Yet Mr. Alexander and his wife, Suzanne, decided they wouldn't let it crush them.

"We said, hey, it doesn't seem like we can do anything to affect this disease, but we can certainly do something about how we react to this disease," Mr. Alexander said this morning. "And we made a goal, a family goal, that we'd leave ALS better than we found it."

In March, the Alexanders launched LiveLikeLou.org, a charity fund established through The Pittsburgh Foundation that is working to raise awareness, support research and provide patient care for people in Western Pennsylvania with ALS.

This morning at the Duquesne Club, Downtown, Mr. Alexander announced the creation of the Iron Horse Awards. The financial grants, named after the nickname earned by baseball great and ALS victim Lou Gehrig, will fund activities and programs for children of people diagnosed with ALS.

The program, which is being funded with an initial $5,000 grant, is the first of its kind for the Western Pennsylvania Chapter of the ALS Association, which will distribute the awards to local families.

"ALS is a disease that affects the entire family, and maybe nobody as hard as the kids," said Merritt Holland Spier, executive director for the organization.

The first Iron Horse Award will provide wireless Internet and an iPad equipped with special education programs to an autistic 12-year-old from Nanty-Glo, near Johnstown, whose father has been rendered paralyzed and unable to speak by ALS.

It will be what Mr. Alexander hopes is "the first of many" Iron Horse Awards, which could cover items ranging from tae kwon do lessons to prom dresses -- "whatever that child needs to maintain that sense of normalcy," he said.

ALS is a disease that can be socially isolating and financially challenging, Mr. Alexander said, but the Iron Horse Awards send a message that in Western Pennsylvania, people with ALS have support.

"We're telling that family that you have a community," he said.

Applications for Iron Horse Awards will be available at http://webwpawv.alsa.org/.

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This story originally appeared in The Pittsburgh Press. To subscribe, go to http://www.post-gazette.com/trypittsburghpress/ Kaitlynn Riely: kriely@post-gazette.com or 412-263-1707. First Published September 7, 2012 7:30 PM


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