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Her Realm, Personal website and blog of Cole
Aug 22

3 Ways You’re Doing the ALS #icebucketchallenge Wrong

Donate to the ALS Association!

If you don’t live under a rock, you’ve seen plenty of people getting splashed with ice water over the last few weeks. Celebrities, friends and family and people you’ve never heard of make the list. Often it’s funny. Sometimes it’s creative. It’s always supposed to raise awareness and money for the ALS Association, which helps provide services and research for ALS, a disease that I’ll talk more about later.

You may even have participated in many of these videos, but from completely missing the point to forgetting key points, not all the challengers are following the guidelines or even being helpful. I’m not just talking about teens who do it for fun, either. The glaring omission of “ALS” in a number of video is terrible.  Don’t make these same mistakes.

1. You don’t say “ALS”

“Amyotrophic lateral sclerosis” is a mouthful. ALS will do in most situation’s. It might clear up confusion to call it Lou Gehrig’s disease. Humans, after all, do like to associate things with people. I’ll admit that even hearing that name didn’t provide me with any more answers, and judging from the comments on YouTube videos, I’m not alone.

I may be slightly more alone because I actually Googled ALS. The results of my search were revealing, particularly that Stephen Hawking is often labeled as one of the people with this condition. Hawking’s condition is a specific form of ALS.

This disease attacks the body, essentially causing victims to become prisoners in their own body because they are no longer able to control their body as is breaks down. Hand shaking/spasms are an early symptom.

Hawking also stands out as a perfect example because he has survived so long with the disease — over 50 years. Most people can count on no more than a few years after diagnosis, which is pretty scary. Most die from respiratory failure.

But perhaps the reason most people with ALS don’t stand out is that their numbers are small: around 30,000 in the United States. Smaller than my hometown. That’s why it’s great to get people talking.

2. You don’t link to the ALS Association or anyplace where you can donate.

You’re trying to raise money or awareness, so why aren’t you sending people to ALSA.org? This website originated the ice bucket challenge, and you can donate through a variety of methods here.

Again, most of the people who I saw kvetching about videos were obviously too lazy to search themselves. Add a link in your video description. Annotate your video obnoxiously. If it helps one more person click or donate, isn’t it worth the effort?

There have been a few more sites listed in videos. For example, your state may have a local chapter. ALS TDI is a company focused on cures through medication if you prefer your money to go to a cure than to go to “overhead.” When it comes to overhead, though, much of that is by providing help and services to ALS patients and their families.

3. You don’t donate.

The challenge isn’t about getting out of paying money by doing it. The challenge is actually that you only donate $10 while anyone who doesn’t accept donates $100. Many people have done both and more, which is great. Whether you dunk in 24 hours or not, donating is the right thing to do!

Donations have already topped $41 million, which is leaps and bounds greater than the same period for last year. Like I mentioned, some money goes to research. Other money goes for care and services. It all goes to a worthy cause.

Also? If filming this video is the only good deed you do this year because you think it’s enough? It’s not.

Bonus: You film in portrait.

Come on, guys. Video is intended to be filmed in landscape mode, so turn that phone!

Donate to the ALS Association.

Check out the ALS ice bucket challenge on:

One of the most-viewed videos that has helped raise awareness is below. It may very well make you cry.


One comment on “3 Ways You’re Doing the ALS #icebucketchallenge Wrong”

  1. Great post and I agree completely. The ice bucket challenge is a great way to raise money and spread the world, if you include information about ALS and a call to action. Don’t just film yourself dumping ice water over your head and then nominate some friends.

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