In the past couple of weeks we have all seen people all over the world pouring ice-cold water over their heads for the #ALSicebucketcallenge. It is a form of charity fundraising activity where people either dump ice-cold water over their head or donate $100 (or more) to the ALS foundation.
Differing opinions on the challenge
According to what I have heard from people around me, it seems like people are divided in their opinions about the challenge. Some think it is very useful in raising awareness and collecting donations for such an important cause. Some others just seem annoyed by the videos all over internet of people pouring water without even donating money to the cause.
Multiple benefits of the #ALSicebucketchallenge
Personally I think this entire campaign has been just great. With the help of this challenge 1) more people know about ALS, 2) over $80 million of donations have been collected for ALS research, 3) people of all ages have been introduced to and started to understand the importance of donating to charities to fund scientific research. This is especially important in a time when government has substantially cut back funds and much of scientific progress depends on private resources.
What is ALS?
Amyotrophic Lateral Sclerosis (ALS) is a motor neuron disease affecting brain’s ability to communicate with the muscles. It is more commonly known as Lou Gehrig disease, for a famous baseball player who suffered from the disease. Amyotrophia literally means lack of muscle nourishment to illustrate the atrophy of unused muscle tissue, lateral refers to the region of spinal chord that houses affected nerves and sclerosis describes the “hardening” of the affected spinal tissue as neurons further degenerate in advanced ALS.
Commonalities in neurodegeneration
Similar to other neurodegenerative conditions like, Alzheimer’s, Parkinson’s, and Huntington’s diseases, ALS is caused by the accumulation of misfolded proteins in the brain. Other possible causes have also been shown in almost all neurodegenerative diseases such as genetic mutations, intracellular mechanisms like mitochondrial or lysosomal dysfunction, and programmed cell death. This makes it hard to pinpoint the exact initial cause of the problem that needs to be targeted therapeutically before the disease starts its degenerative progression.
Another similarity in neurodegenerative diseases is that there is a high level of variability in symptoms and time-course of the disease. For ALS, some patients are diagnosed at later stages of their lives and only live for 2-3 years after they’re diagnosed, whereas others are diagnosed in their teens and live much, much longer. Dr. Steven Hawking, the prominent English theoretical physicist, is an example of the latter case, although neurologist do believe he is an outlier in either case. Such a level of variability also limits the effectiveness of potential therapeutic agents for all patients.
Scientific research is key
After seeing the success of the icebucketchallenge videos all around the social media, my only hope is that we can somehow initiate similar campaigns for all of the other extremely debilitating neurodegenerative diseases. Currently we still do not know the exact cause of these conditions; only some of the risk factors are known. Moreover there are no robust treatments for any one of these diseases. Patient are usually incapacitated especially towards the later stages of the diseases, and fully depend on their families and caregivers. Lack of a cure is not only a tremendous burden on the sufferer, but also on their families and the society as a whole.
I believe that this is exactly why scientific research, from basic to clinical, is *so* important. We need to know more, to understand better, to cure all. However for this to happen, we need your help.
Resources to donate
Below is a list of donation websites of associations for ALS and other neurodegenerative diseases. Please donate!
Alzheimer’s disease (http://www.alz.org/join_the_cause_donate.asp),
Parkinson’s disease (http://www.pdf.org/fund_memdon),
Huntington’s disease (https://www.hdsa.org/how-you-can-help/donations.html)
Image source: Flickr