ALS and the Chilling Reality of the Ice Bucket Challenge

For many people they have recently been exposed to the acronym ALS through the very popular Ice Bucket Challenge, but how many of those people actually understand what ALS is and what they are contributing by participating. ALS stands for Amyotrophic Lateral Sclerosis and currently affects, according to the ALS Association, about 30,000 people have the disease at any given time in the United States. ALS is a neurodegenerative disease that affects many of the neurons in the brain and spinal cord, mainly those involved in movement called the “motor neurons”.  As the motor neurons begin to die off the victim loses control of their movement and the dying of these neurons eventually leads to their death. Recent literature has revealed that there could be some possible enzymes that have undergone a mutation that is leading to the symptoms and the diagnosis of ALS such as SOD1. However, there is no cure for this traumatic disease and very few medications have been established to help treat the disease. There is also no one test that can diagnosis ALS, so many patients do not know they have the disease until late into its unset.
Recently the Ice Bucket Challenge for ALS has been given much scrutiny due to many assumptions of only 7% of the money raised actually being given for research. However, the ALS Association dismisses this assumption and claim that by the end of the Fiscal Year 14 (FY14) that 28% of their funding was spent on researching treatments and a cure for ALS. In cases like this, it is most important that the community become informed with the cause and understand that things such as the Ice Bucket Challenge have a very critical purpose if completely understood. Awareness for diseases such as ALS is important, but ensuring the general public is also informed may be just as important to ensure that those participating in campaigns such as the Ice Bucket Challenge are respectful to those with the disease and to their family and friends.
However, beyond the scope of ALS many countries that do not have the clean supply of water that the United States is fortunate to have look at the Ice Bucket Challenge as a waste of clean water. So is this type of awareness the best approach to the disease or any disease at that? In the end do we know any one right way to address awareness of diseases such as ALS or is there even a right universal approach? Is the challenge anymore then a popular social media challenge? Do the members of the Ice Bucket Challenge understand what they are raising awareness for? These questions are not ones that can be simply answered yes or no, but need deeper thought and discussion to determine where the real cause of awareness can be found.
In the end is the Ice Bucket Challenge raising the right awareness or is it another social media trend and is it worth the money raised if the majority of those participating do not understand its true purpose?