TLDR – ALS is a miserable disease but America has engaged in this crazy social media-fueled challenge to try and raise money and awareness for research and to find a cure for it. It’s been very successful, and here’s the story about how I got involved. :)
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By now, you definitely know that this is sweeping the nation. What started as a gag between pro-golfers to raise money for pet charities has caught the eye of the rest of the nation thanks to a former college baseball player from Boston College. But, even if you’ve seen people pouring buckets of ice and ice water onto their heads, you might not know what it the disease actually is.
While the social media craze has increased donations AND awareness of the disease, I wanted to take a moment to get a little bit deeper into both. :)
What is ALS (amyotrophic lateral sclerosis), actually? According to the ALS Association’s website, ALS is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord resulting in muscle restriction and weakness. Baseball player Lou Gehrig is easily the most famous American who had been affected by the disease; so much so that some people actually call it Lou Gehrig’s disease. Check out a more detailed yet accessible explanation of the details of the disease here.
More about ALS…most commonly, ALS strikes people who are middle aged, about 40 – 70 years old. It has also affected other famous Americans such as the creator of Sesame Street (a man named Job Stone) and former U.S. Vice President Henry Wallace. Most notably, I think, is the fact that ALS occurs throughout the world in all countries and is blind. That is, there is no racial or ethnic boundary to ALS and it can strike just about anyone.
According to the association’s website, about 20 percent of people with ALS live 5 years or more and up to 10 percent will survive more than 10 years and 5 percent will live 20 years. There are people for whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed. Doctors know very little about how or why.
I’ve only ever known one person who has passed away from ALS, and while I don’t feel comfortable naming them on this blog, I saw the affects of the debilitating disease with my own eyes. Those who are affected by this, in some of the most extreme conditions, can be robbed by their own body of the ability to breathe – which I think of as a fundamental physiological right.
I can hardly imagine having to have a tracheotomy and relying on an external force to help me live internally.
So, once I started hearing about this social media craze, I first was a little ill-minded. I thought, “I feel like people are just dumping random ice buckets over the top of their head without truly knowing what it’s about, how it affects people, or what it truly means.” But, at the end of the day, the reason I decided to accept the challenge and do the video is to, truly, raise awareness for this tough, tough affliction. Most, importantly I’d like to point out one thing:
The data says so: as a result of the ice bucket challenge, donations and awareness of ALS have increased in the United States.
Truth be told, I feel as if I have done my part to learn more about and help others better understand the disease. And when it comes to things like this that may not necessarily affect us directly, I think it’s important to still do as much as you possibly can. It’s kind of like everyday philanthropy. ;)
Until there is a cure for ALS, scroll down to see more about how my participation in the ALS challenge started and a little bit about how those that I have challenged have also gotten involved.
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I was unexpectedly challenged by Amy S., a teacher and mentor of mine, from Blacksburg High School. Screen capped below, Amy challenged me just prior to getting a biiiig bucket of ice water poured on her head. I had 24 hours to respond.
So I decided to do it, particularly so that I could share it with my social network of people who might have known about it just yet.
SO, I filled up the bucket with half of my family’s freezer chest of ice and topped it off with some nice icy cold water. I let it sit for a while to let the chill sit in…and here’s what happened:
First, I decided to send it on to my good friend Shane M., who works with Actively Caring for People. I had a feeling he would be super into it. And he was so much so that he had already done it!! I hadn’t seen it, but Shane had already posted his video after being challenged – but since I challenged him again he Actively Cared by donating $50 anyways! GO SHANE!
Next, I sent the challenge onto my friend Sara C.. Sara is a good friend of mine in Fredericksburg, VA and we spoke last night – she wants to do it bigger and we are going to drop a huge cooler of ice on her head later today!
Third and finally, I decided on my good friend Karie G., who is just such an amazing sport – and I also was very confident that she would do the challenge. Karie was actually at a birthday party for one of her daughter’s friend’s at the time – but she even got them in on the challenge! Karie sent me a video to personally thank me for challenging her. And then she sent me the video…here’s what happened! ENJOY & thanks for reading! :)
And if you feel so moved, either get with the ice challenge yourself or click here to donate to ALS.