When the Pirates hosted the Chicago Cubs back on September 8, nearly 300 supporters of the "Live Like Lou" foundation were in attendance at PNC Park. The foundation was established by Neil Alexander and his wife Suzanne late in 2011, about six months after he was diagnosed with Amyotrophic Lateral Sclerosis (ALS), which is also referred to as Lou Gehrig's disease.
Through "Live Like Lou," the couple's goals are to raise public awareness of ALS, help provide care and comfort to those battling the disease in Western Pennsylvania and their families, and support scientific research targeted at finding a cure. On that special night at the ballpark, the Pirates provided a platform to help deliver the message. Pirates Charities gave specially-designed "Live Like Lou" t-shirts to all members of the group, and Neil threw out a ceremonial first pitch to Pirates broadcaster Steve Blass. In addition, Neil and Suzanne's 10-year-old daughter Abby sang the national anthem with her classmates as part of the O'Hara Elementary School chorus.
"There's been fantastic response from the community and from organizations like the Pirates," Neil Alexander said. "That evening was fantastic. I'm a lifelong Pirates fan, so it was very magical for me to have that experience, to get to meet the Pirates and to have the support of the organization. The awareness factor was just fantastic. They played our video while I was standing out on the field, and since then we've gotten a lot of recognition. Having the Pirates support us gives a grassroots foundation like ours a lot of legitimacy in the community."
Blass, the former Pirates' pitcher and 1971 World Series hero, met Alexander in May of this year when he emceed a "Live Like Lou" fundraiser at the Clemente Museum in Lawrenceville, and he could not have come away more impressed.
"We throw words like 'hero' and 'champion" around all the time, but you don't have to wear a uniform to be a champion. Neil Alexander is a champion," Blass said. "He's not putting his head in the sand. He's not backing away from what is a very cruel and very vicious disease. He's not angry. He's not bitter. He's finding ways to raise awareness and raise money, and hoping that will help.
"I'm blown away by his intelligence, his perspective and his courage, and I'm so inspired by him and his family. Whenever they contact me about something they have going on, I'm absolutely there."
The foundation and its accompanying website -- www.livelikelou.org -- are named in honor of New York Yankees great Lou Gehrig and the example he set for all people living with ALS. It was back in 1939 that the Hall of Fame first baseman abruptly retired from baseball after being diagnosed with ALS. During an unforgettable speech he delivered on July 4 that year, Gehrig said: "Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth. I have been in ballparks for 17 years and have never received anything but kindness and encouragement from you fans I may have had a tough break, but I have an awful lot to live for."
ALS is a disease that affects the brain's ability to initiate and control muscle movement, and at present there is no cure or treatment. The 47-year-old Alexander described receiving the diagnosis from his doctor as "crushing." But not long after that, he became determined to face the disease with dignity and courage and do whatever he could to help others battling it now and in the future.
"Shortly after my diagnosis, my wife and I were floundering and that's not how we normally acted," said Alexander, who also has an eight-year-old son named Patrick. "We're action-oriented people and we finally just said, 'We have to do something.' That was the impetus for the foundation. Then as I was doing research on Lou, I became more and more impressed with the example he set.
"It began to feel like there was someone somewhere saying to me: 'Hey we know this is really, really tough. But here's how you're expected to act because Lou acted this way.' Now whether that sounds corny or trite, I don't know, but it has been a source of strength for me.
"Most people die within three to five years of being diagnosed with ALS. But the hope is that we can begin to incrementally push that back from three to five, to five to seven, to seven to 10 by developing different therapies. It's shocking that there's not only no cure, there's no therapy. But there seems to be a quickening of developments. Our hope is -- and whether it's in time for me, we'll see -- that we can help move that along and help the next father or a father five years from now."
ALS most commonly strikes people between the ages of 40 and 70, and as many as 30,000 Americans have the disease at any given time. Gehrig died at age 37 on June 2, 1941 -- a little less than two years after his famous speech. Another baseball Hall of Famer, pitcher Jim "Catfish" Hunter, died of ALS in September of 1999 at the age of 53.
The Pirates' association with the "Live Like Lou" foundation has become part of the team's overall efforts to be part of the fight against ALS. In fact, the Pirates recognized the ALS Association of Western Pa., the Muscular Dystrophy Association and the ALS Therapy Development Institute during a special on-field group salute prior to a game against the San Francisco Giants on July 8. Individuals from all three organizations were in attendance that afternoon as guests of the ballclub in connection with the 4ALS program, which is also designed to create awareness about the impact ALS has on individuals who battle the disease and their families. ALS-related public service announcements were shared with everyone at PNC Park that day as part of an MLB-wide effort.
"In addition to Neil, several people in our front office have family members with ALS and know, first hand, the devastating effects of this disease," said Patty Paytas, the Pirates' Vice President of Community & Public Affairs said. "As an organization, we want to do what we can to help those fighting ALS, as well as those who are trying to find a treatment and cure. We are very proud to work with Neil and "Live Like Lou" as part of our overall ALS efforts."
To find out more about Neil and Suzanne Alexander and the "Live Like Lou" foundation, visit www.livelikelou.org.