ALS – Kapil's Take

A week ago I wrote an article on the Controversies surrounding the ALS Ice Bucket Challenge and my response. The spread and intensity of the Ice Bucket Challenge does not seem to be slowing down. In the past one week, I have come across some interesting thought provoking facts and some very interesting opinions.

Animal Testing

Some people including Pamela Anderson have decided to say no to taking the ice bucket challenge and no to donating to ALS charity because of their stance on animal testing. Anderson wrote:

Sorry -I can’t bring myself to do your Ice bucket challenge.I enjoy a good dare- It’s always good to bring awareness – in fun, creative ways / I don’t want to take away from that.but it had me thinking. Digging a bit deeper. I found that we may not be aligned – in our messages. So…- I thought Instead / I’d challenge ALS to stop Animal testing /– Recent experiments funded by the ALS Association, mice had holes drilled into their skulls, were inflicted with crippling illnesses, and were forced to run on an inclined treadmill until they collapsed from exhaustion. Monkeys had chemicals injected into their brains and backs and were later killed and dissected.

[The Daily Banter]

If you dig deeper you will find that ALS research is not the only place where animal testing is used. In fact animals have been used repeatedly throughout the history of biomedical research. Early Greek physician-scientists, such as Aristotle, (384 – 322 BC) and Erasistratus, (304 – 258 BC), performed experiments on living animals. (source) In recent years, the practice of using animals for biomedical research has come under severe criticism by animal protection and animal rights groups. To express my view on has been difficult for me.

My stance on this is the hope to find middle ground on this issue. I do believe that if animal testing is ‘necessary‘ to find cures of diseases that affect us humans, then perhaps it may be justified for humans to do so. However, it is my hope that scientists push towards a more ‘humane’ form of testing or simply find ways to steer away from animal testing and towards other models.

What is your take on the practice of using animals for biomedical research?

Wasting Water

This issue has come up time and time again in conversations with people who are against ‘wasting water’ for the ice bucket challenge. My take on this is that in the context of the ALS Ice Bucket Challenge, I do not believe that people are wasting water when they take the ice bucket challenge. It has been an integral part of ALS awareness campaign. Please read “Controversies and Cynicism Surrounding the ALS Ice Bucket Challenge“.

To those skeptics who argue that water is being wasted in this Ice bucket challenge, I challenge them to do a little thought experiment: In the context of raising awareness of ALS, imagine taking out the water/ice aspect of the challenge where people simply donate money to ALS charity and then challenge others to do the same. Do you see this as an effective campaign? (The question is rhetorical. The obvious answer is NO. For supporting argument please read “Controversies and Cynicism Surrounding the ALS Ice Bucket Challenge“).

However, let me take a step back for a moment. There are many elements involved when something becomes ‘viral’. Certain elements are necessary until an idea has reached ‘The Tipping Point’, but once it passes that tipping point there isn’t much that will stop it from spreading and at this point certain elements lose their status as ‘necessary. ‘(Recommended reading “The Tipping Point: How Little Things Can Make a Big Difference“). In this case the ALS ice bucket challenge may have already reached a point where using Ice/water may not even be necessary.

Where is the Money Going?

You can view ALS Association’s financial statements online. At first glance one might think it’s a negative that ONLY 28% of funds go into research, but a closer look reveals that ALSA has a broader mission:

“We also spend money on care services to people living with the disease and public policy initiatives to encourage the advancement of legislative policies that benefit ALS families. Again, we spend a total of 79% on programs and services.”

The ALS Association has a four-star rating from Charity Navigator, and has also been rated favourable by Charity Watch (watchdog groups in the industry). Just how much weight should be placed on this spending measurement and the ratings in general is a flashpoint in the non-profit world, says Suzanne Perry, a senior editor at the Chronicle of Philanthropy. “It’s a love-hate relationship. If [charities] get rated highly, they broadcast it everywhere. If they get a lower grade, the methodology is ‘flawed,’” she says.[http://fortune.com/2014/08/22/ice-bucket-challenge-als-charity/]

Some have claimed that employee salaries at the ALS Foundation are out-of-this-WORLD![Political Ears] ALSA however says that the salaries of its executive staff are in line with the job markets where they are located—and in line with those of other national charities. This addresses the question: “Are employee salaries at ALSA high compared to other non-profit organizations?.” But the bigger question is “Should employees at charitable organizations be getting paid that much at all.

ALS Association addresses some of the donors and skeptics in “The ALS Association Debunks Fake News Article that Went Viral”. It seems to me that ASLA has been performing according the Non-Profit organization’s guidelines. But the question is: Is this enough?

But wait, here’s how Dan Pallotta shows us that “The way we think about charity is dead wrong”

But lastly:

ALSA: Oh you know what’s a great idea – Let’s Trademark “Ice Bucket Challenge”?

ALSA filed an application with the US Patent and Trademark Office seeking to trademark the term “Ice Bucket Challenge”. WAIT…. WHAT!?!

Many people called the move “disgusting,” “shameful,” and “in poor taste,” leading the group to withdraw its application. WHAT WERE THEY THINKING?!?

So my final take is this: Know where your money is getting spent! Non-profit organizations usually have their financial statements available to public and if not, you can ask for it. Study what they are doing and if it aligns with your values, donate generously, if not, then voice your concerns.

We live in a highly democratic era of the Internet – every tweet, every video, every blog post and every Facebook comment counts.

Also, take an analytical approach when judging whether something is right or wrong. It is difficult to make people work for non-profit organization – people do need to get paid, but the question again is: are those salaries justified – you tell me!

So this is my (second) take on the ALS Ice Bucket Challenge – What’s yours?

Unless you have been living under a rock, you probably have been part of or at least heard about the ALS Ice Bucket Challenge. It’s all over the internet, on the news, talk shows, Youtube, and it has completely taken over everyone’s Facebook news feed. The Ice Bucket Challenge aims to raise awareness for Amyotrophic lateral sclerosis.

The Challenge

You complete the challenge by pouring a bucket of ice on your head or donating $100 to an ALS foundation, you then nominate other people to do the same – it’s simple, fun, it’s for a good cause and it’s effective.

EVERYONE is on this – actors, singers, professional athletes, news reporters, billionaires, and of course regular folks like you and me.

It has spread like wild fire and It has become a world wide phenomenon. It’s HUGE! But whenever something gets this big there are bound to be some controversies and cynicism.

So what is ALS?

ALS is characterised by muscle spasticity, rapidly progressive weakness due to muscle atrophy, and difficulty in speaking (dysarthria), swallowing (dysphagia), and breathing (dyspnea). Median survival time from onset to death is 39 months, and only 4% survive longer than 10 years. Most die from respiratory failure, usually within three to five years from onset of symptoms. (Wikipedia: http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis)

Enlightened church against raising funds for ALS research:

Check this out!

The Catholic church of Cincinnati is asking it’s members to not donate to the cause because the organizations involved with ALS Association funds a research that uses embryonic stem cell research, and the church has gone as far as asking its school principles to not encourage students to raise money for the cause.

I don’t even know what to say to that. This is not the first time religion has come in the way of progress, and sadly it won’t be the last.

How much awareness is too much awareness?

Then there are people who have now started complaining that there is just too much of this, too much of the ice bucket challenge videos on the news, on talk shows, on Youtube and Facebook. I personally know some who say they are simply annoyed and fed up of it and are looking for ways to block this content from their Facebook feeds.

This not only upsets me, it angers me profoundly. I didn’t see these people complaining when Gangnam Style was all over the place, neither do they have a problem with posting a selfie every 10 seconds, oh but yes, they do have a problem with videos that help spread awareness of a deadly diseases.

The question I ask to these people is: Would you be annoyed or would you be willing to block these videos if YOU or your loved one had ALS? Watch this:

You do feel pretty stupid now, right? If you still don’t get it, let me demonstrate what you are exactly doing when you say something like this:

No Ice (Ice Baby), Just Cash

There are people who have complained that the whole Ice over head is totally unnecessary and people should just donate the money to ALS. With all due respect, you are being ignorant, or simply knowingly neglecting the fact that the ICE bucket challenge is THE single most important factor in raising awareness for ALS. Apart from doctors, how many of you actually knew about ALS? I’ll be honest – I did not know about ALS until this ice bucket challenge came along!

Secondly, an interesting comment I read the other day was that people are likely buying the ice to do the Ice Bucket Challenge, instead they should just donate that money to charity.

Marketing my dear Watless, Marketing!

That’s like telling companies to stop spending money on ads and just put that money into improving their products. If that was the case, no one would buy their products because no one would know about it.

5 reason the Ice Bucket Challenge is so effective is:

You are asking people to take a very specific action – pour a bucket of ice over their head, or donate $100 to ALS charity.
The action to “donate $100 to ALS” is a very specific action which directly translates to raising funds. It is not “help raise awareness” or “show support” etc..
after the challenge is completed you nominate other people. You’re connecting, you are spreading the world in a very direct way. People are using their social connections which are much stronger than holding a sign that says “Donate to ALS”
It’s fun! Cold ice water on the head, face and body is something people don’t experience on a regular basis, it puts people in a different state, physically and emotionally. It is engaging!
The Challenge! – It is almost like we are mentally wired to prove ourselves. Remember the time at the school playground – “Bet you can’t do this?” What did you do? You ended up doing it. Now you are an adult, but your reputation is still at stake! 😉

Then there are people who are complaining that some will pour a bucket of ice, just to get away from giving $100 to charity. SO WHAT?! It’s almost as if, these people didn’t want to donate the money, and are upset that other people got away with not donating. Even if they don’t donate, they are raising awareness for ALS, and even if these people nominate 3 others to do the same, we potentially have hundreds of people spreading the word and donating. Plus, I know so many people who took the challenge AND donated to charity!

Then there is the “How long will this last?”. Even if all of this dissipates in the next 2 weeks, we have millions of people now being aware of ALS. Let’s say this Ice bucket challenge inspires only ONE person, that one person may some day find a cure for this disease! BE POSITIVE!

Don’t Waste Water

There have been many people complaining that the ice bucket challenge wastes a lot of water. People are not wasting water for the sake of fun, they are raising awareness for a deadly disease. It is a medium that is being used for a good cause. For further explanation read “The 5 reason that the Ice Bucket Challenge is so effective is:” above. What have people who post such pictures achieved? What have you done for ALS or for the water crisis in Africa by posting such pictures?

Sure, I do agree together with many people who took the ice bucket challenge, that we shouldn’t waste water. In certain places in Africa and India, people may want to approach raising awareness for ALS in a different manner than using ice/water.

But wait… there’s a twist!

Watch this video below:

Accordingly to National Geographic, it takes 2,700 litres of water to make one t-shirt. ONE SINGLE T-SHIRT!

Which is enough for one person to drink for 900 days! 900 DAYS!

So to the people who don’t want to “waste” water on this ALS Ice bucket challenge, are you willing to sacrifice that cotton t-shirt you’re wearing right now?

I took the challenge, I donated

If you do want to donate, I suggest donating to your local ALS charity so that people in your region can benefit from it, for e.g. if you are in Canada, you can donate to http://www.ALS.CA/ICEBUCKETCHALLENGE

That’s my take on the ALS Ice Bucket Challenge! What’s yours?