On Sunday, I was invited to participate in the #ALSIceBucketChallenge. I had noticed a peculiar uptick in videos of people pouring ice on themselves on my Facebook and Twitter feeds in recent weeks, and seen an amazing amount of #ALS mentions, but I realized, even with all that coverage, I still knew absolutely nothing about it - not what ALS stands for, not what the disease entails, nada. So I opened a new tab, went to Google, and started to research. Below is a high-level overview of ALS and the Ice Bucket Challenge, summarized for anyone who, like me, knows very little about the situation. Im posting this in lieu of icing myself for drought-related and for I-dont-want-to-freeze-myself-related reasons, but mainly because I believe this is a lot more helpful and productive to the cause (and I donated too, of course). WHAT IS ALS? Amyotrophic lateral sclerosis, more commonly known as Lou Gehrigs Disease, is a neurodegenerative disease affecting the way the brain communicates through the spinal cord to the muscles throughout the body. As ALS progresses, patients lose their ability to voluntarily control muscle action, and may eventually reach total paralysis. Approximately 450,000 people live with ALS worldwide (30,000 in the US). Its considered fatal, and there is no known cure. Symptoms during the onset of ALS are easily overlooked and misinterpreted, as anything from struggling to chew food to difficulty buttoning a shirt can be a sign of the diseases presence, but ALS is only diagnosed once every other possible cause for the motor neuron damage is ruled out, and even then, theres no definitive diagnosis. The cause of ALS is, once again, not known. There are some cases of genetic mutations passed down that leads to the disease, but most cases are sporadic, with no reasoning as to why some people develop ALS and others dont. In 1994, the FDA approved Rilutek, the first drug treatment for ALS. Unfortunately, Rilutek only slows down the degeneration, prolonging survival by just a couple of months. Its been 20 years since then, and still so little is known about amyotrophic lateral sclerosis, and still no cure has been found. Lou Gehrig (1903-1941), whom the disease is named after, played 17 seasons of professional baseball for the New York Yankees, setting records for most grand slams and most consecutive games played (which he held for 56 years). He was the leading vote-getter for MLBs All-Century Team in 1999, and voted the best first baseman of all time by the Baseball Writers Association in 1969. His consecutive game streak ended in 1939 when symptoms of muscle weakness and struggles to control bodily functions led to extensive testing which resulted in his ALS diagnosis, forcing him to retire. The disease claimed his life two years later. For you basketball fans out there, Lou Gehrigs story reminded me a lot of Magic Johnsons story - being diagnosed with HIV and forced to retire from the NBA in 1991, when the general consensus was that anyone with HIV will pretty soon get AIDS and soon thereafter succumb to the disease. Thankfully, with a sudden rush of interest in the disease and a massive uptick in contributions worldwide (sounds familiar?), the medical industry took significant strides in treating HIV, permitting Magic and many, many others to live very long, healthy, and happy lives. Lets do the same for ALS. Donate. Share. Discuss. WHAT IS THE ICE BUCKET CHALLENGE? The Ice Bucket Challenge concept started in early July as a means of getting people to donate to various good causes, such as when NBCs Today Show host Matt Lauer contributed to the Hospice of Palm Beach County after having water poured over his head. On July 31, Pete Frates, a 29-year old man who was diagnosed with ALS in March 2012, heard about the challenge from his friend, and posted the video linked below this paragraph, hoping to turn the trend into a fund-raiser for the disease. His efforts coincided with those of Pat Quinn and Anthony Senerchia, patients in similar situations. They challenged their friends, who challenged more friends, and thus was born this incredible movement thats dominated all of social media the past couple of weeks. https://facebook/photo.php?v=10100972302395017 Heres an incredibly emotional video from December of last year of Mr. Frates, along with his wife and brother, discussing his completely normal childhood, a promising baseball career, and then the onset of the disease bringing it all to a screeching halt. Today, he can no longer speak, walk, or move his arms. In his words: “The story right now goes: You’ve got ALS, have it for a little while, a long while, but either way, the end is always the same. ALS always wins. So in order to rewrite the end of it, we need to raise awareness, money.” https://youtube/watch?v=85VkgNt5OgI HAS THE CHALLENGE BEEN SUCCESSFUL? Obviously, the end goal is to find a cure, which has yet to be accomplished and could take years to develop. Theres a good chance most of the people posting or seeing these videos dont know very much about ALS (like me). Millions of gallons of water have been wasted (which is especially a problem for us drought-ridden Californians), and there are indeed many other worthy causes out there. All that said... YES, its been resoundingly successful. The fact of the matter is that more than 1.2 million videos have been shared on Facebook since June and the phenomenon has been mentioned 2.2 million times on Twitter just since July 29. The ALS Association has received $13.3 million in donations from 260,000 new donors the past couple weeks, compared to $1.7 million during the same stretch last year. In just a couple of short weeks, millions upon millions of people have learned about ALS in some medium, and organizations have received a massive boon in funding for research and development. Theres a long, long way to go, but this has been a great step in the right direction. Donate. Share. Discuss. If youre curious about where the money goes to, the ALS Association posted this on Saturday: alsa.org/news/archive/whats-next-for-als.html Thank you, Dana Frostig, for challenging me and motivating me to learn about and donate to this cause. Ill pass on the challenge to Dor Carpel, Hadar Dor, and Judi Yuhjtman. Donate to a cause that resonates with you, or learn about and share something new. Ill finish with a transcript of Lou Gehrigs The Luckiest Man on the Face of the Earth speech, given at a sold out Yankee Stadium on July 4, 1939, less than 2 weeks after his retirement: 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 the earth. I have been in ballparks for seventeen years and have never received anything but kindness and encouragement from you fans. When you look around, wouldnt you consider it a privilege to associate yourself with such fine looking men as are standing in uniform in this ballpark today? Sure, Im lucky. Who wouldnt consider it an honor to have known Jacob Ruppert? Also, the builder of baseballs 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, Im lucky. When the New York Giants, a team you would give your right arm to beat, and vice versa, sends you a gift—thats something. When everybody down to the groundskeepers and those boys in white coats remember you with trophies—thats something. When you have a wonderful mother-in-law who takes sides with you in squabbles with her own daughter—thats something. When you have a father and a mother who work all their lives so that you can have an education and build your body—its a blessing. When you have a wife who has been a tower of strength and shown more courage than you dreamed existed—thats the finest I know. So I close in saying that I might have been given a bad break, but Ive got an awful lot to live for. Thank you.
Posted on: Mon, 18 Aug 2014 09:04:27 +0000
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