the ice bucket challenge and ALS

A call to action initiative launched in 2014 went viral, soaking millions of people in freezing cold water. It drew attention from people from all walks of life, including actors and politicians. The ALS ice bucket challenge was a massive success in terms of raising funds and attracting awareness for the noble and deserving cause. Millions of dollars have been raised to aid in the research of this condition known as ALS. Among everything, the initiative raised much-needed consciousness. Millions of people who never knew the disease existed had their eyes turned towards the crazy idea of the ice bucket challenge and in so doing they realized the existence of the said disease and its devastating effects on society. Amyotrophic lateral sclerosis is also known as Lou Gehrig’s disease, named after the famous New York Yankee’s baseball player Lou Gehrig who suffered from the disease back in 1938.It is a disease that affects the nerve cells specifically in the brain and down the spinal cord. These two organs mainly control muscle movement. When a person has ALS the nerve cells degenerate and are unable to function properly in the transmission information to the muscles. Even with the popularity surrounding it, the ice bucket challenge came up short in its quest to try and mitigate the effects of the deadly ALS on the population.

ALS Ice Bucket Challenge, basically involves pouring of a bucket of ice mixed with water on someone who has been nominated by a random individual who may have performed the activity before or has donated a specified amount of money towards the research of ALS. Majority of the people who did the ice bucket challenge only did it for fun. They did it because it was a fun activity that was currently trending on both social and mainstream media. A great majority of the people who did the ice bucket challenge did not understand the purpose of the challenge. Some of them did not even know the meaning of the abbreviation ALS as evident in some of the numerous videos posted online. Indeed there are individuals who even referred to it as the ILS ice bucket challenge or the LAS ice bucket challenge. Like many other viral charity campaigns it faded as quickly as it started. It was short lived and was easily forgotten. In this age of the internet it becomes hard to maintain the attention of an audience and the challenge is a testament to that statement. Sustainability of the charitable activity was a challenge and it was over in the same year it began. For most of the people posting ice bucket videos of themselves on Facebook, Vine, and Instagram, the charity part remains a postscript (Mitsumoto, 2009).

The money collected is nowhere near to the amount needed to wage a formidable research war against ALS. Yet the campaign is long gone and with it the multitude of donors that are desperately needed to fund research on treatment and cure. A disease that affects the central nervous system and specifically the brain is a tragic one. It is debilitating to those that are diagnosed. ALS devastates both those who are ill and the loved ones around them. It has been a long time since the days of Lou Gehrig and still no cure has been identified. The disease can kill the patients in as short as 3 to 5 years (Preedy, 2011).Slowing down the disease is the only measures that is currently taken. For most people it is too little too late. The disease has different subcategories but will in the end develop equally and lead to death (Segawa & Ijichi, 2013).The origin of the disease is still unknown. The research on the origin is still vague but scientists have concluded that it is not infectious. There are many questions that remain unanswered about ALS. More research needs to be done and that means that more funding is required. This means that a more sustainable means of fundraising and awareness creation must be formulated. The fundraising method must be able to keep up with the demands of the research.

In every 100,000 people in the world, 5 are affected by ALS (Q, 2012). Those numbers keep going up every year yet the cause remains unknown and the cure unidentified. This does not mean that the ALS research has not taken great strides in a positive way. In fact as a result of the money collected during the ALS ice bucket challenge, researchers were able to fund a project that identified a variant gene in ALS. This is good news for all the parties involved. It means that all is not quit on the research front and something is being done to ensure that the fight against ALS rages on. This should provide the much needed motivation to scientists, fundraisers and the general public. It indicates that there is a ray of hope. Indeed a light at the end of the tunnel for patients, their loved ones and the public at large.

The fight against debilitating diseases has to be fought hard and the disease attacked from all directions. This means that we must involve as many stakeholders as possible. One of those major stake holders is the government. The government can be engaged the dialogue on ALS research. If such an entity decided to fund scientist or even set up a laboratory and structures required in the research, then a big step in the fight against the disease will be taken. Fun charity challenges are a great way to create awareness but for solid sustainable funding, major stakeholders are the way to go. Private sectors should not be left behind. Safeguarding a population’s health is also their responsibility. A lot of manpower is lost when people are disease stricken. This puts out of commission the desperately needed manpower required to work both in the private sector businesses and the government. If such a disease as ALS is eradiated then that means the private sector get more laborers to work in the varied industries in that sector. This means that production will be high. This is a good enough reason to invite the private sector to the table to discuss about the fight against ALS. Numerous non-profit making scientific organizations have come forward and supported the fight against ALS either by directly funding research or creating awareness in their own way. Throughout the years non-profit making scientific organizations have stood up and come through for the community in terms of funding research on various devastating diseases and luckily ALS has not been left behind.

The only way to beat major devastating and debilitating diseases is through research. The said research requires a lot of money and this money can be collected effectively through fundraising. One stream of funds or a single form of fundraising is not enough to fund a major research and ensure that the disease is completely eradicated. Varied steams of funding must be explored. Some of them can be fun and engaging like the ALS ice bucket challenge and some need to be more solid and sustainable. In this case sustainability takes precedence over fun and short lived charity activities.

References

Mitsumoto, H. (2009). Amyotrophic lateral sclerosis: A guide for patients and families. New York: Demos Health.

Preedy, V. R. (2011). Diet and nutrition in palliative care. Boca Raton, FL: CRC Press.

Q, A. A. (2012). Amyotrophic Lateral Sclerosis: New Insights for the Healthcare Professional: 2012 Edition: Scholarly Brief. Scholarly Editions.

Segawa, K., & Ijichi, R. (2013). Amyotrophic lateral sclerosis: Symptoms, treatment and prognosis. New York, NY: Nova Biomedical.