I received my death sentence in September 2006 when doctors told me I had amyotrophic lateral sclerosis (ALS), a progressively paralyzing neuromuscular disorder. There is no cure. Commonly known as Lou Gehrig's disease after the Yankee Hall of Famer who died of it, ALS is so uncommon that medical researchers consider it an "orphan" illness—so few people have it that pharmaceutical companies lack financial incentive to invest in finding a cure.
The public also pays scant attention to ALS. (May 2008 was ALS Awareness Month. Who knew?) Public attention and contributions understandably go to more widespread killers like cancer, heart disease and diabetes.
All this means that ALS patients must seize the initiative for funding research. Of course, the vast majority of ALS patients are too sick and incapacitated to take such steps. I am one of the lucky ones. My neuromuscular decline has been steady, but slow enough to let me lead a reasonably normal life. After holding endless pity parties for myself, I decided—not entirely successfully—to transform myself from victim to ALS funding advocate.
Lacking any fundraising experience (I've rarely even asked for a pay raise), I took some time off and returned to my childhood roots: the baseball field. While I still had the strength to hold a bat, I attended a Baltimore Orioles fantasy baseball camp. Some might call it Old Man's Little League, but I reveled in what would likely be my last chance to play the game of my youth. And as a lifetime Orioles fan, this particular camp held special appeal to me.
I expected to have a good time. I did not expect to find the potential solution to my ALS fundraising problem. But I did.
If Little League makes men out of boys, Orioles camp makes boys out of men. The games were highly competitive, but they were also marked by youthful enthusiasm, pure joy and moments of compassion. When my teammates saw me struggling to swing a standard bat, they bought me a lighter one that could still generate power (this helped, but often I just missed the pitch faster).
We hung out with former Orioles, most of who were blue-collar guys thrilled to have made it to the majors. They didn't just give us cursory face time; they coached us intensively and did their best to improve our game. Everyone played, talked and laughed baseball. Orioles manager Dave Trembley told us how he tried to get thrown out of a game without using cuss words; it wasn't easy, and he succeeded only after calling the umpire a "den mother." There was much more. We also shared life stories, and I learned that I was not the only one battling a terminal disease.
At some point, we talked about what Major League Baseball could do to fight ALS, and I realized that next July 4 will mark the 70th anniversary of Lou Gehrig's famous farewell speech at Yankee Stadium. Since his retirement, more than 600,000 Americans have shared Gehrig's fate, as medical science has made virtually no progress toward finding a cure. Through the years some players and a few teams have occasionally helped raise funds, but Major League Baseball has never taken comprehensive action against ALS. Defeating ALS will require the same type of determination, dedication and drive that Gehrig and Cal Ripken demonstrated when they set superhuman records for consecutive games played. With this in mind, why not make July 4, 2009, ALS-Lou Gehrig Day? Dedicate this grim anniversary to funding research for a cure; every major- and minor-league stadium might project the video of Gehrig's farewell, and teams, players and fans could contribute to this cause. An event of this magnitude has the potential to raise millions, dwarfing the relatively scant sums that ALS walks, rides and similar small-scale efforts have produced.
To this day, Lou Gehrig is still named in some polls as the greatest player in baseball history; by all accounts, he also had a reputation for uncommon decency. His legacy for greatness will live forever, but it's time to end the heartbreaking legacy of the disease that bears his name. Major League Baseball can help make that happen.
Of course, this is just a distant dream of a single ALS patient who played baseball every day of every summer growing up. I now look to the game of my youth to help give me and others like me a chance for life.