Hundreds donate for ALS research

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Two years ago, when Neil and Suzanne Alexander launched LiveLikeLou.org, they thought maybe they'd raise $40,000 to support efforts in ALS research and patient care.

They have far surpassed their original goal.

Last week, a telethon held by WTAE to raise money for the Alexanders' organization brought in more than $145,000 from more than 560 donors. That brings the total amount raised by LiveLikeLou.org to more than $800,000, an amount Mr. Alexander said will go a long way toward funding one of their major goals: supporting research to find a cure or better treatment for his incurable disease.

"We now believe that we can continue to make significant inroads into the research route, which is the most costly project to fund," he said.

Mr. Alexander, a 48-year-old husband and father of two, was diagnosed in June 2011 with amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig's disease, after the Yankees ballplayer who died from it in 1941.

Decades after Gehrig's death, it continues to be a disease with no cure and no effective treatment. ALS attacks the motor neurons, usually resulting in paralysis and difficulty breathing and swallowing. The average patient dies two to five years after diagnosis.

After his diagnosis, Mr. Alexander and his wife created LiveLikeLou.org, which they hoped would increase awareness of ALS, provide care to families living with ALS and support research into a cure. The donor-advised fund of The Pittsburgh Foundation launched in March 2012.

In the past two years, LiveLikeLou.org has started several programs.

It has directed funding to the ALS Association Western Pennsylvania Chapter to pay for care for patients with ALS. A grant program begun in 2012 and named the Iron Horse Awards funds activities and programs for children of people who have ALS. LiveLikeLou.org also started a college scholarship program for children of people diagnosed with ALS.

Last fall, LiveLikeLou.org and The Pittsburgh Foundation partnered to give $100,000 to the University of Pittsburgh School of Medicine for ALS research.

Mr. Alexander said LiveLikeLou.org wants to direct more funding to research projects.

The Alexanders were one of the Pittsburgh-area families featured on a television program last week marking the upcoming 75th anniversary, July 4, of Gehrig's farewell "luckiest man" speech as a Yankee after his diagnosis. A telethon held for LiveLikeLou.org in conjunction with the program brought in $145,680 in donations to the Alexanders' fund, The Pittsburgh Foundation reported.

"It was a great, great evening, and once again Neil's tremendous courage and commitment to this cause shone through," said John Ellis, vice president for communications at The Pittsburgh Foundation.


Kaitlynn Riely: kriely@post-gazette.com or 412-263-1707.

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