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#IceBucketChallenge: Go beyond the challenge

By now your Facebook, Twitter, Instagram or whatever social media you are on that I am not cool enough to understand, feed has been figuratively flooded with videos of friends dumping buckets of ice water over their heads in the name of raising awareness of ALS. The #IceBucketChallenge has gone viral in 2014. I even partook in the dumping. But more importantly, I took part in the donating. While the challenge asks you do dump and then donate $10, if you do not dump you are requested to donate,  $1, $5, $100, $200, no donation is too big or too small. Why not do both, #DumpAndDonate.  Thus far the challenge has raised more than $13MM and produced thousands of videos. But I have to ask, has it also raised awareness?

According to a survey done by the ALS Association, 50% of Americans do not know what ALS is. ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s disease, is a neurological disorder with fatal consequences.  I will leave it to you to read more about ALS, but suffice it to say it is a horrible way to die.  Mitch Albom’s book Tuesdays with Morrie recounts the authors visits with a former college professor who was dying from ALS.

Tuesdays_with_Morrie_book_cover

This year marked the 75th anniversary of Lou Gehrig (The Iron Horse), one of the most feared hitters to ever play baseball, standing in Yankee Stadium and proclaiming himself “the luckiest man on the face of the earth.” At the time Gehrig was fighting ALS. He was already a shell of his former self.  He was inducted into the Baseball Hall of Fame later that year by a special election, and less than 2 years later, Gehrig passed away.

lou-gehrig

Kevin Turner, former NFL running back, is currently battling ALS and his foundation is working to raise awareness and funding for ALS research.  I had the privilege of meeting Kevin a few years ago when he was in Boston for a talk on the dangers of concussions.  It is humbling to see how the disease can take so much from the people it inflicts.

nfl_kturnerillo_576

Today, there is no effective treatment for ALS.  With only 1 FDA approved therapy available, research is needed to find new treatment options.  $13MM may seem like a lot of money and in fact is more than 20% of the peak annual NIH budget on ALS focused research (back in 2010), but it goes really fast in the research setting, especially when it costs hundreds of millions of dollars to eventually bring a drug to market.  Beyond public funding and public awareness, we need to make sure politicians and agencies like the National Institutes of Health (NIH) continue to keep ALS in the pipeline for funding opportunities.  Neurological diseases, such as ALS, Parkinson’s and Alzheimer’s disease pose a potentially crippling burden on our health care resources in the coming decades.  Go beyond the challenge and write to your representatives to have them support funding for new research, and continue to support increasing the NIH budget for all medical research.  Maybe someday we can offer more than some 30 second videos of us dumping water over our heads to those suffering from ALS, we can offer HOPE.

Great article about the NIH funding issues surrounding ALS research: http://www.newsobserver.com/2014/08/19/4082444_ice-bucket-challenge-underscores.html?sp=%2F99%2F108%2F&rh=1

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This entry was posted on August 21, 2014 by in Peter Waterman's posts, Uncategorized and tagged , , , , , , .

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