LiveLikeLou.org, a charity fund established by Neil and Suzanne Alexander of O'Hara, has made its first major donation -- $20,000 to the Western Pennsylvania Chapter of the ALS Association.
The donation -- which will go directly toward patient care for some of the 300 families in Western Pennsylvania who have a member diagnosed with amyotrophic lateral sclerosis -- comes just nine months after Mr. Alexander, 46, director of corporate services with Downtown-based financial management firm Hefren-Tillotson Inc., was diagnosed with ALS.
The neurodegenerative disease, more commonly known as Lou Gehrig's disease, causes a person with ALS to lose use of his hands, arms and legs. The disease makes swallowing and breathing difficult, and most patients die from suffocation two to five years after diagnosis.
It was a crushing prognosis for Mr. Alexander and his wife, Suzanne, who have a 10-year-old daughter and an 8-year-old son. But the Alexanders have decided to use the ALS diagnosis to create something positive.
In February, they announced they would establish the LiveLikeLou.org fund -- named after baseball legend Lou Gehrig -- through The Pittsburgh Foundation. Their goal is to create an enduring charity that raises awareness of ALS, provides care to ALS families and supports research aimed at finding a cure.
"I think when he made the switch from fighting for himself to fighting for the cause and fighting for the legacy of our cause, I think that's when we really started fighting," Mrs. Alexander, 44, said. "Fighting for ourselves and for our kids, fighting for something bigger than ourselves."
The fund had its official launch Saturday, at a party at J. Verno Studios on the South Side that doubled as the couple's 20th wedding anniversary celebration.
The $20,000 donation announced there represents a significant contribution to the Western Pennsylvania ALS group's annual budget, said board president Eric Zydel. It will fund wheelchairs, speech devices and hospice and caregiver assistance, said Merritt Holland Spier, executive director for the organization.
She said the Alexanders and the LiveLikeLou.org organization are already achieving one of their goals: raising awareness.
"Neil is one of the most courageous people I've ever met," Ms. Spier said. "He's absolutely changing the way people see ALS."
Through a combination of sponsors and private donations, including those made for the charity fund's launch, LiveLikeLou.org has already raised more than $200,000, Mr. Alexander said. He said he sees it as "just the beginning" of the work it will do.
Kaitlynn Riely: firstname.lastname@example.org.
This story originally appeared in The Pittsburgh Press. For information about subscribing go to http://old.post-gazette.com/trypress/ Kaitlynn Riely: email@example.com or 412-263-1707.