Diagnosed with a deadly but uncommon illness, I call upon the game of my youth to take action.
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).
Hello,
What is the best way to assist in making "July 4, 2009, ALS-Lou Gehrig Day?" happen? I have found a petiition online on the website http://www.petitiononline.com/122296/petition.html is this a good way to support the creation of this day? Do you suggest any other ways? I would like to help. Sue
hi---
My dad told me that a good site is als.tdi--they are in cambridge, mass. If you get on their page, you can probably find my dad's name and make a donation through that link. or to any of the links on that site. Thanks for replying and my dad says hi.
Jill- I was a student in your father's first evidence class at BYU in 1985. We skiied together a few times with some other law students for the next two ski seasons. Like Rex Lee, another one of my professors, and another remarkable man lost to cancer, Michael inspired me and so many others to learn with a purpose-- to go out and so some good... to be not just good lawyers, but good citizens. Now I am again inspired to write to the major league baseball folks to encourage them to do this great idea and then send in my donation. If your father knows a foundation that is worthy, let us know which one should get our money and lead the way. Martin Crowley- Reno, Nevada JRCLS class 1987
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