Grant to help kids of ALS patients

Award meant to ‘maintain that sense of normalcy’ amid diagnosis

An initiative launched Friday to benefit the children of people diagnosed with amyotrophic lateral sclerosis — more commonly known as ALS or Lou Gehrig’s disease — is “an extremely important program” for families in Western Pennsylvania, said Jane Gilbert, president and CEO of the national ALS Association.

The program, dubbed the Iron Horse Awards in honor of Gehrig, the baseball great who died from ALS, will provide financial grants to fund activities and programs for children of people diagnosed with the

“We made a goal, a family goal, that we’d leave ALS better than when we found it.” — Neil Alexander, diagnosed

with ALS 15 months ago

disease. Ms. Gilbert spoke Friday at the Duquesne Club, Downtown, where a breakfast event marked the start of the initiative.

Although she oversees the national organization, she called work on the local level “the most important” when it comes to supporting patients of ALS and searching for treatments and a cure.

A diagnosis of ALS — a neurodegenerative disease that has no cure, no effective treatment and usually results in death two to five years after diagnosis — is “life altering,” Ms. Gilbert said. And not just for the person diagnosed, but also for his or her family and friends.

“The fact that you are helping children is just fabulous,” she said. “Because certainly sometimes, those [people on the] periphery are the people who are most impacted and have the least amount of attention given to them.”

The idea for the Iron Horse Awards, as well as the funding, came from LiveLikeLou. org, a charity fund established through The Pittsburgh Foundation to raise awareness, support research and provide patient care for people in Western Pennsylvania with ALS. O’Hara couple Neil and

Suzanne Alexander, who started LiveLikeLou.org, know well the effect a diagnosis of ALS can have on a family.

Fifteen months ago, Mr. Alexander, a 47-year-old executive at Downtown-based financial management firm Hefren-Tillotson who has a 10-year-old daughter and an 8-year-old son, learned he had ALS.

It was, Mr. Alexander recounted Friday, “a crushing, crushing diagnosis.” Yet the Alexanders 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. “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 and presented a $20,000 check to the Western Pennsylvania Chapter of the ALS Association, a donation that went directly toward patient care for some of the 300 families in Western Pennsylvania who have a family member diagnosed with ALS.

On Friday morning, with Mrs. Alexander, Ms. Gilbert and supporters of ALS efforts in Western Pennsylvania looking on, Mr. Alexander announced the launch of the Iron Horse Awards, funded with an initial $5,000 grant from LiveLikeLou.org to the local ALS chapter.

The awards can cover items ranging from tae kwon do lessons to prom dresses — “whatever that child needs to maintain that sense of normalcy,” Mr. Alexander said. Applications for Iron Horse Awards will be available at http:/webwpawv.alsa.org.

The first of what Mr. Alexander said he hopes will be many grants provided to local children will go to the Martin family of Nanty-Glo, near Johnstown.

Thomas Martin was 43 years old when he was diagnosed with ALS. A decade later, Mr. Martin, who turns 54 today, has surpassed the average life expectancy from diagnosis for a person living with ALS, but he is completely paralyzed and unable to speak. His wife, Linda, cares for him and their 14-year-old son, Thomas, who is severely autistic.

Their Iron Horse Award will provide wireless Internet and an iPad equipped with special education programs to Thomas, which Mrs. Martin hopes will help her son communicate. Her husband knows about the award, she said, and they are both “very happy” about the gift.

“It’s very nice that there is something for the kids, because it is draining financially for families, and emotionally to physically, to be caring for someone with ALS,” Mrs. Martin said in a phone interview.

Although ALS can be a disease that is socially isolating and financially devastating, Mr. Alexander said, 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.

In Pittsburgh this weekend, that community will be out in force. Pittsburgh’s annual Walk to Defeat ALS, which as of Thursday had raised 72 percent of its $ 500,000 fundraising goal, will take place at the Pittsburgh Zoo & PPG Aquarium this morning, with more than 3,000 people walking.

And tonight, Mr. Alexander, who set out to approach his disease with the same optimism as did baseball great Gehrig, will be at PNC Park. Despite hands weakened by ALS, he will throw out the first pitch of the Pirates game.