For the past month, millions people have been pouring buckets of ice-cold water on themselves in the interest of raising awareness for ALS (amyotrophic lateral sclerosis.) With the ALS Association receiving over $100 million in donations this year, the challenge has undoubtedly done its part in ensuring that more funds are available for ALS research. But this doesn’t necessarily mean that each and every donor has been motivated to find out what ALS is, or why it’s always been such a critical disease.
Before heading straight to www.alsa.org to get a better idea of what ALS is, I encourage you to watch this man’s ice bucket challenge. It might be a little different from what you’ve seen all over your news feeds, but hence the name, it’s probably one of the last and only ALS videos you need to see.
There are more than 450,000 patients living with ALS all over the world, with 1 out of 90 people diagnosed every 90 minutes. Looking far beyond the numbers, these statistics contain the lives of mothers, fathers, children, friends, and so many more, each having their own stories to tell.
And as much as we wish that each of those stories could end with a cure, there’s no way of getting around ALS. It is what it is – no cure, no treatment, and not enough funds for research.
The symptoms of ALS include but are not limited to:
- Difficulty in speaking, swallowing, and breathing
- Weakness in and inability to use arms and legs
- Cramping and twitching of muscles
In line with the fact that ALS is a progressive and neurodegenerative disease, the symptoms of ALS will manifest in a patient until the very last motor neuron in their body withers away.
Coming to terms with ALS is both a terrifying and devastating thing to do, but Anthony was strong enough to open up about how the disease has had such a strong impact not only on his own life, but also on those of his family members who had suffered and passed away due to ALS.
Whether or not you’ve done the ALS ice bucket challenge, it doesn’t take much to realize that splashing a bucket of ice-cold over your head for a few seconds is nothing compared to what people diagnosed with ALS have to go through each day.
It’s one thing to raise awareness out of genuine concern, but it’s quite another to promote something over and over again without stopping to think about what it might mean for people whose lives have been so radically altered because of it.
The whole point isn’t to hate the ice bucket challenge under the pretense that it’s useless, because it really isn’t. The ALS ice bucket challenge alone has raised over $100 million, all of which will be used to further the research that’s been done in the hopes of discovering a cure for ALS.
And as Anthony said in his video, he’s so much more thankful than annoyed to see what the ice bucket challenges have done to push people to find out what ALS is and why it has always been such a critical and pertinent disease.
There’s no denying that social media is one of the most powerful tools that can be used to spread ideas, information, and stories to millions of people all over the world. But amidst all the posting, sharing, and liking going on, it’s important to remember that social media campaigns have the dangerous potential to strip a cause of its meaning and reduce it to a mere gimmick.
So, now what?
Film as many ice bucket challenges as you want. Donate to alsa.org, and tell your friends and family to do the same. Even better, pledge to donate $100 to ALS research for every bucket of ice-cold water that you pour over your head. Just remember that every second of discomfort that you experience will never be commensurate to what ALS can do to the lives of its victims and the people whose lives they have touched through the years.
With that, I nominate each and every one of you to take on the ALS ice bucket challenge. But before reaching for the nearest ice-water bucket and dumping it over your head, take a moment to think about how you can use it not just to get attention or to relieve yourself of the heat, but to really make a difference in the lives of people diagnosed with ALS all over the world.
Click to donate and find out more about ALS: http://www.alsa.org/
- “ALS Frequently Asked Questions.” ALS Therapy Development Institute. ALS TDI, 2014. Web. 31 Aug. 2014. <http://www.als.net/About-ALS-TDI/ALS-FAQ/>.
- “What Is ALS?” The ALS Association. The ALS Association, 2010. Web. 30 Aug. 2014. <http://www.alsa.org/about-als/what-is-als.html>.