Saturday, January 14, 2017

14: Remember the Ice Bucket Challenge for ALS?

Who can forget the ALS Association's (ALSA) Ice Bucket Challenge - what an extraordinary viral event. I saw lots of them and did one too, but did you know it made a difference? It truly did,  "Scientists discovered a new ALS gene, NEK1, known to be among the most common genetic contributors of the disease. This important finding is a direct result of your outpouring of supporting during 2014’s ALS Ice Bucket Challenge. Thanks to you, researchers now have an exciting new target for drug development!"
August is actually ALS Awareness month, but my mom picked two nonprofits for us to celebrate on her birthday, so let's look at ALSA and happy almost birthday, mom. What is ALS? Commonly referred to as Lou Gehrig's disease:
 Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons  die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.- (http://www.alsa.org/about-als/)
ALSA provides care services, educates, advocates policy, and  funds and looks for aid in research for ALS.  An average of 15 new cases are diagnosed every day, and each patient is given from 2-5 years of life expectancy after diagnosis. When I saw the included graphic, I wondered why veterans were 2 times more likely to develop ALS. I looked around and regardless of what I have found the far, the answers in this 2008 article were typical of the answers most discussed over the last few years: http://alsn.mda.org/article/als-and-vets-searching-connections Whether you want to retry the ice bucket challenge or get involved some other way, ALS is a great cause.

I learn a lot about ALS doing studying ALSA, but I can't leave the topic without sharing Lou Gehrig's famous speech from the Offcial Lou Gehrig website, which is far better than the one in Pride of the Yankees (1942):
"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 seventeen years and have never received anything but kindness and encouragement from you fans. 
"Look at these grand men. Which of you wouldn't consider it the highlight of his career just to associate with them for even one day? Sure, I'm lucky. Who wouldn't consider it an honor to have known Jacob Ruppert? Also, the builder of baseball's greatest empire, Ed Barrow? To have spent six years with that wonderful little fellow, Miller Huggins? Then to have spent the next nine years with that outstanding leader, that smart student of psychology, the best manager in baseball today, Joe McCarthy? Sure, I'm lucky. 
"When the New York Giants, a team you would give your right arm to beat, and vice versa, sends you a gift - that's something. When everybody down to the groundskeepers and those boys in white coats remember you with trophies - that's something. When you have a wonderful mother-in-law who takes sides with you in squabbles with her own daughter - that's something. When you have a father and a mother who work all their lives so you can have an education and build your body - it's a blessing. When you have a wife who has been a tower of strength and shown more courage than you dreamed existed - that's the finest I know. 
"So I close in saying that I might have been given a bad break, but I've got an awful lot to live for."- 
- Lou Gehrig http://www.lougehrig.com/about/farewell.html

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