Tag Archives: ALS

When viral charity promotions go off the rails

Unless you reside under a rock or in a cave somewhere without any access to TV, radio, Newspaper, the Internet or other human beings you are probably aware of the “Ice Bucket Challenge”. Now before anyone get’s offended we applaud and support all sincere efforts to support a worthwhile charity. For the record, the ALS Association is utterly deserving of attention and donations! The ALS Association’s has a long and well documented history of supporting those afflicted with ALS (also known as Lou Gherig’s Disease) and efforts to find a cure for this terrible disease.

ALS stands for “amyotrophic lateral sclerosis”. It is a degenerative disease that affects the nerve cells of the brain and spine. As the disease progresses it ultimately causes loss of voluntary motor control. This affects an individual’s ability to initiate and control voluntary muscle movement and can progress to the point where complete paralysis can occur. This loss of motor control can and often does lead to the inability to speak, swallow and breathe. The average life expectancy of a person diagnosed with ALS is five years. There is no existing treatment protocol aside from a drug called Riluzole which has shown limited benefits in slowing the progression of the disease. There is NO CURE for this terrible disease.

If you have participated in or seen a video of the Ice Bucket Challenge we enthusiastically support what in most cases is a sincere effort to do something good. Unfortunately, the likelihood is that you now know more than previously did about ALS as a result of reading these few short paragraphs. There in lies the problem with the run away freight train this completely valid effort has become. For many this has become a self serving, attention drawing stunt that has little to do with supporting the cause. Most videos that are now coming out are complete “look at me”, Jack@!s style stunt videos designed to self promote and torture one’s friends. Many people in the videos don’t even mention the disease itself, or mispronounce the three letters by which it is commonly known. Even celebrities have joined the fray and further turned this into a punchline. We now see insane,incoherent rambling speeches, the nominating of dead people or hijacking attention for causes that have nothing to do with ALS. One such example is B Real of Cyprus Hill fame who recently used his Ice Bucket Challenge to promote marijuana. In his video (I shouldn’t even promote this piece of garbage, but I will just to be fair LINK for anyone interested) he does not even bother to mention ALS. You will also note in the link provided how the media encourages others to imitate stunts like this by applauding his “effort”. This is a viral charity promotion that has completely gone off the rails.

Inspiring, educational and courageous videos by actual ALS sufferers are completely lost in the avalanche of foolish, self aggrandizing stunt videos that completely miss the point. Here is an example of one of these inspirational efforts:

If this doesn’t punch you right in the gut you should stop reading right now. Nothing else posted on this site will ever make any sense to you or be of value to you.

If the words in this post resonate with you consider the following thought… Whether you accept or decline the challenge make your video educational and don’t lose sight of the reason the challenge was started. Remind people of the reason you are doing this in the first place. You may even want to decline to participate or even donate to ALS (you shouldn’t feel guilty about this). Perhaps another cause is more near and dear to your heart. There is nothing wrong with that. There are many horrific diseases. Diseases for which there is no cure. Diseases that people suffer with and that affect their loved ones. Take a moment to recognize ALS and the merit of donating to the cause. Then go on to discuss the cause that is most important to you.

Bottom line, make your video count! This is a golden opportunity to do something good for others. Don’t squander it with foolish stunts that do nothing for anyone but you. Hopefully this post inspires you to JUST GIVE! ( #justgive ). God Bless