Yet, today I consider myself the luckiest man on the face of this earth... I might have been given a bad break, but I've got an awful lot to live for.
-Lou Gehrig Farewell Speech, July 4, 1939
Despite the fact that it was made twenty-six years before I was born, I can remember watching Pride of the Yankees when I was a kid and crying my eyes out at the end, when Lou Gehrig made his farewell speech to baseball. I didn’t understand exactly what was going on, or what Lou Gehrig’s disease was – I just knew it was sad. I learned later that what we Americans often think of as Lou Gehrig’s disease is officially amyotrophic lateral sclerosis, or ALS. And while the movie focuses more on the successes of a sports hero and the sadness around his getting sick, it could not begin to show the true devastation that ALS causes to the people affected by it.
ALS is a neurological disorder characterized by progressive degeneration of motor neuron cells in the spinal cord and brain, which ultimately results in paralysis and death. Patients in the later stages of ALS are totally paralyzed yet, through it all, their minds remain unaffected. There is no meaningful treatment for ALS and there is no cure.
Over 5,600 people in the U.S. are diagnosed with ALS each year (15 new cases every day). 60% of the people with ALS in the Database are men and 93% are Caucasian. Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis, but the disease can occur at a younger age.
I can’t even begin to imagine what it would be like to go through something like that. The terrifying feeling of losing everything and knowing it. The heart-wrenching sadness of watching a loved one trapped inside a body that is giving up on them. Upon diagnosis patients live 2 – 5 years on average, with approximately 10 percent living 10 years or more. 2-5 years is nothing. Even 10 years is nothing compared to a lifetime. Especially when those years are spent with ALS.
Neil Alexander is a Pittsburgher who does know what it is like to live with ALS. He was diagnosed at the age of 46. And this active, fun-loving husband and father from Pittsburgh knows what is ahead for him and other with ALS. But he decided he wouldn’t just sit back and focus on the negative. Instead, he and his wife created a foundation called LiveLikeLou.org to honor the example Lou Gehrig set for all people living with ALS – determination, hard work and grace in the face of adversity. Their goal is to have a meaningful impact on the disease locally and nationally for years to come.
Funds raised by LiveLikeLou.org will raise awareness of ALS, provide care and comfort to ALS families in Western Pennsylvania, and support scientific research targeted at finding a cure. In fact, LiveLikeLou.org made its first grant in January, 2012, purchasing two pieces of critical equipment (that are not covered by insurance) for the ALS Association Western Pennsylvania Chapter’s “Loan Closet”.
Go check out LiveLikeLou.org and learn more about ALS, Lou and Neil. Think about donating, if you can spare it. If you do, your money will go to help people – and their families – deal with this terrible disease a little better. Click here to donate. But don’t take my word for it – let Neil himself tell you about it:
Neil Alexander at The Pittsburgh Foundation Board Meeting from The Pittsburgh Foundation on Vimeo.
2 comments:
so cool that ordinary people, not superstars, are doing amazing things to help others.
My uncle died of ALS, a terrible disease.
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