Why the Ice Bucket Challenge is bad for you

The ALS campaign may be a great way to raise money – but it is a horrible reason to donate it

(AP Photo)

(AP Photo)

The ALS Ice Bucket Challenge is bad for you.

I don’t mean you will catch a cold (you won’t), or look like a craven sheep (you will). I mean that when you are inspired by a viral fad to donate your limited dollars to a charitable cause, you ignore the diseases that genuinely threaten.

The marketing gimmick is very clever. It is short, immediately understandable, and like the most popular forms of slacktivism, it is easy to do, entertaining to watch, and narcissistically self-promoting. Every screen on our desks, on our walls, and in our hands is filled with celebrities, neighbours, porn stars, and politicians showing off their earnest compassion and occasional humour. The ice bucket’s ubiquity rivals other famous charitable stunts like Movember, Livestrong, or the infamous Kony 2012.

As a result, the ALS Association has received more than $70 million so far, compared to only $2.5 million during last year’s campaign. It is a great way to raise money — but it is a horrible reason to donate it.

We, as individuals and as a society, have finite resources to donate to medical research and other worthy causes. When we decide where to spend our charitable dollars, we need to consider three factors.

1. Where is the greatest need?
2. Where will my dollars have the greatest influence?
3. What is the most urgent problem?

The ALS challenge fails all three of these tests.

First, ALS research is not an especially great need in public health. It is classified as a rare disease and, thankfully, only about 600 people die from it every year in Canada. That sounds like a lot, but that is not even close to the top 20 most fatal diseases according to StatsCan (the top three being cancer, at 72,000 deaths per year; heart disease, at 47,000; and cerebrovascular disease, 13,000).

Related posts:

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Understanding ALS

Dave Lambert’s brush with death 

Second, it is already extremely well funded. As this chart from CDC data shows, last year ALS killed 6,849 people in the U.S., and attracted $23 million for research (a ratio of $3,382 per death). Heart disease, by contrast, killed 596,577 but only raised $54 million (a paltry sum of $90 per death). If you want your donation to make the biggest difference, fund the diseases that need the most money.

Finally, ALS research is not an urgent need. If you want to help where time is of the essence, then look to Syria (greatest international refugee crisis in a generation), Ebola (now a full blown global health emergency), or the Central Africa Republic (quietly bleeding to death unnoticed by the world).

We aren’t rational, though. Typically, you will spend more time considering where to order a pizza and what to put on it, than you will deciding where to donate your charitable dollars. As a result, the real threats, the diseases that are far more likely to kill you and your loved ones are ignored. This is why the ALS Ice Bucket Challenge is bad for you, and me, and all of us. Instead of supporting what is most needed, we support what is most amusing.

But you can change this. Print the simple reminder below, fold it up, put it in your wallet. And the next time you reach for your credit card number, pause and actually think.

Good reasons to donate:

1. Need
2. Influence
3. Urgency

Bad reasons to donate:

1. Ice Buckets
2. Wristbands
3. Mustaches

Scott Gilmore is a former diplomat and the founder of Building Markets

Readers reply: Follow this link to a selection of their feedback. 

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Why the Ice Bucket Challenge is bad for you

  1. As a result, the ALS Association has received more than $70 million so far, compared to only $2.5 million during last year’s campaign.

    Quite a windfall. Hopefully, they don’t have a geisbrecht-ian commission structure.

    • I don’t know that I have ever been so infuriated about an article before! To say ALS isn’t in “urgent” need or deserving of our money?!?!? Maybe he should go say that to the face of someone who has lost their motor skills and/or is slowly suffocating to death! He is saying not enough people are dying this way, therefore we need to spend our money elsewhere! EVERY person deserves to have a chance to live. I’m sure heart patients, cancer patients, AIDS patients who know suffering would not wish suffering on someone just because their #’s don’t compare! ALS did an awesome job this year to raise the funds to help them with research, how dare someone begrudge them and tell them they don’t deserve it! To the writer – You sir are a vile human being. I hope you are never in the position that you or someone you love be affected by this disease, because I’m willing to bet all the money in the world that you would change your tune real quick!

        • The federal government doesn’t have the luxury of looking at small numbers, they have to look at what is more dangerous to the country as a whole annnd to be fair it’s not ALS… That being said, people are allowed to donate to whatever cause they want and this authors article was in bad taste.

        • I agree 100%. I am so angry that the author suggested that we send our money to people overseas instead of helping people right here at home. This is part of what is wrong with our country. We help everyone else in the world before we help our own.

          • Typical. I suppose we should let other people govern themselves yes? How well did “minding our business” work out in the forties again?

          • Are you serious? Have you compared the domestic budget with our foreign aid budget?

      • The writer and fed government are quick to point out the inproportional amounts of money to deaths spent but refuse to even acknowledge the cost of the suffering both financial and mental to the individual and the family because of their chicken hearted lack of discussion and lack of meaningful legislation. They must truly believe that to suffer is divine.

        • Cut-and-paste from a longer text that broke down ALS financials:

          ALSA has directed only 7.71% of its budget to Research. And not only that, 63.63% of their budget for the fiscal year was dedicated to “Other Program Activities” I’m not going to guess what those other programs are, but they sure are not research. And administrative cost? 10.54% and 18.11% for fundraising. What does this mean? That our of the $100 I would give to this organization $7.71 of it would go to research, that’s about as much as a test tube costs.

          In other words, the main benefactors of your charity dollars going to this stupid fad are the people who work for ALS Society; ALS research for a cure/treatment? Eeehhhh, not so much…

          • It’s too bad you don’t do your own research – Here is ALS Canada’s financial report (page 21 breaks it down nice and easy for you) http://www.als.ca/sites/default/files/files/ALS%20Canada%202013%20Annual%20Report_Layout%201.pdf

            But since I’m going to guess you’re too lazy to check for yourself lemme do it for you: 21% client services, 29% research, 25% fundraising, 9% is administration – and that $600,000 out of $6.6million – that includes salaries, AND office costs, it includes the phone lines, building rental, and so much more. Seriously – check your facts before you copy & paste

          • Administration costs eventually become static, therefore the more money raised the greater the contribution to research and client services. In this case the cost to fundraise is nil because of the campaigns viral nature.
            I watched a close friend die from this devastating disease, Macleans should be ashamed allowing this to be published.

          • this and every other charity….so what it is more than what they had.

          • This is what happens when you choose to believe shirtless idiots on the internet. Do your own research and learn that what you just posted isn’t true. And naybe think about the fact that you may have dissuaded someone from donating to a worthy cause because you spread a big fat lie.

          • There is a box when you donate that you can click so that your money goes directly to research. Part of the money donated also goes to help those diagnosed with ALS, with wheelchairs and programs for coping with the disease.

      • You completely ignored the point of the article in an effort to insult the author. He did not say that ALS research does not deserve money. He said that there are other, more devastating (contagious), diseases where a donation would better serve humanity (or world health) as a whole. I hardly think that makes him vile. It is common sense and he does make a valid point. If you had $5 million that could successfully save tens of thousands just by making a viable treatment available to them – or $5 million that only has the potential to save tens of thousands, what would be the better choice? It doesn’t matter anyways. People will donate to causes that most ‘hit home’ to them; or to causes that are the forefront of viral [social] media.

        • DEADPIXEL, why are you people comparing apples and oranges? This is not about world health or saving humanity. Giving money to ALS is money well invested, period. Saying it’s a bad idea is the wrong kind of propaganda.

          • Exactly, Raphael. ALS needs more exposure and funding will help.

        • “He said that there are other, more devastating (contagious), diseases where a donation would better serve humanity”… Well THAT right there is my problem with this article. Nobody tells me where my money and time should be spent. That is arrogance, and judgment, neither of which make for good reporting, on any subject, ever. I give my time, and the majority of my financial donations, to animal welfare. I guess that makes me an a-hole of grandiose proportions, in the author’s point of view, since I’m not focused on human causes. When people unite to make the world a better place, for any living creature, whether you agree with the cause or not, it should still be celebrated. If you can’t celebrate, the shut it.

          • “Nobody tells me where my money and time should be spent.” Well, if you donated money to ALS, then you were being told where to spend your time and money. THAT is idiocy.

            The article does not say anything against ALS, it points out the the Ice Bucket Challenge drives the herd to mindlessly open their wallets. It’s great that a cause as noble as the ALS Association will have a surplus this year, but it’s sad that so many causes that are horribly under funded continue to go unnoticed because they didn’t come up with a viral marketing ad.

        • All of these things are worthy of research funding but what you forget is these more rare diseases rarely get massive govt funding so they make slow progress. They got a niche this time and lucked in that it went viral. People should be happy that some of these families are finding hope, perhaps the guy who started it all would have a chance to see his baby . Its none of anyones damn business where they give money. everyone who saw his plea felt it was deserving of a boost in reasearch and he is a hero for it.

          • The article does say something against ALS as a cause: “ALS research is not an urgent need”.

        • The author said “ALS research is not an urgent need” which, while not explicit, is certainly implicitly saying that ALS does not deserve money.

      • Though I see where this article is coming from, i think what this ‘trend’ has garnered, are a number of people who may not have otherwise donated to any cause. In marketing terms, this challenge may have created a new category of donators altogether….perhaps it should’ve been opened up to other causes as an option (which some folks seem to be doing) This ice bucket challenge, has somehow evolved into something that appears gimmicky, but if there’s a way to eliminate/treat even a relatively rare disease, or learn from an effective donation tactic….that may be worth the effort/time/money invested?

      • I totally agree, Jennifer. This article is disgraceful. What an insult to people affected by this disease.

      • I was disgusted by that comment in particular. If the writer of the article was facing a diagnosis I’m sure they’d change their mind about the urgency of finding a cure.

        It’s not as though people set aside a certain amount of money for charity and allocate it accordingly – the decision to donate is often made on the spot. Campaigns like the ice bucket challenge do a great job of getting people into the giving spirit. There have been a range of other campaigns inspired by this one and participants having been donating to other charities as well as ALS.

    • This is a disgrace to all charities period…look here McLeans Magazine, you truly should get out there and talk to the people who do send in donations to “charities” Why in the world is this challenge bothering a major Co-operation like you so much you have to publish this kind of bashing? I will tell you why…your a corporation with not a care in the world, except publicly advertising “FUND RAISING DINNERS” at $1000.00 dollars a plate so Justine Trudeau can gain even more public attention, now that’s a story and says so much about our prioirities!! Perhaps Our world would not be in this financial crumble if not for the misuse of our precious money!! I know the people on Parliament Hill are so hungry and suffer greatly when it comes to Health Care! Or the fact that Mathew McConaughey was Sexiest man alive BTW he did the challenge!! PATHETIC..SHAME ON YOU! For the first time EVER this disease is getting the attention it deserves, what possible reason would you have to try and destroy that?? Have you ever worked or even spoken to someone with ALS…I doubt that very much, it is on the rise, and IS just as important if not more needy than any other illness in terms of research and funding and when you have people in the ALS Society in tears, because they are so overwhelmed by the generosity of others and the very well needed awareness spreading like wildfire, that speaks for itself,. Are you threatened by this publicity? You would never understand that as you sit in your office and eat your Sushi/Vegan Diet or whatever YOUR latest FAD is!!! It doesn’t matter..”Whatever Floats Your Boat, Just Don’t sink Mine” may be a term you should indulge in, and a business card to keep in your wallet!!. Why is there always a self proclaimed hypocritical logic behind killing kindness and caring when it comes to Social Media doing something wonderful for a change? People are actually getting involved with something that is making a difference and if only a moment making someone smile, or brings hope to one person, yet we continue to gobble up the mind numbing nonsense it spews 85% of the time..who gives a rats behind what Kim Kardashian wore, or if she wore it better? People are dying…Do you know what its like to take care of a patient with ALS and have them communicate with you “KILL ME ” because they are in such torture? Perhaps you should look into the eyes of a loved one who feels so helpless and frustrated they collapse from fear and discouragement!! Do you sleep with that on your mind, cause I do!! I also have a Heart Condition, and sport two stents and a few blockages that can’t be repaired that will eventually kill me and I am 45 years old, but I have done the Icebucket Challenge and with pride I have donated… as I think of the funding that is and has been given to The Heart and Stroke Foundation faithfully over the years, its staggering to think you would even compare ALS to such a Publicly National Foundation..do you know where their money goes? I don’t! I have not seen anything from them since I had my Heart Attacks or Mini Strokes other than a pin of a red dress to sport on my jacket! I am not saying we don’t need these things for awareness, but come on! Don’t even pretend to compare the millions of dollars raised every year for this Foundation to ALS. Now, Cancer…yes very devastating and very well funded indeed, had a fright with it myself and lost my father in a 6 month period to it… and one would think that with the BILLIONS of dollars that has been raised over the years…there would be a cure, but that would not go down well with your Corporate plans and my god what would the Pharmaceutical Companies do then? They would fade out and Corporations, Politicians, Greedy Millionaires and Magazines like yours would not exist…I used to actually think McLeans was a pretty Intelligent Classy Magazine…They really should pay more attention to the Editors and Writers and what they publish…because this I know…if it is such a meaningless FAD and ALS is so inconsequential…then you won’t mind if the families of the 600 people who pass every year due to this disease(those are your number’s not mine!) DON”T buy your magazine, or the hundreds that will be diagnosed around the world cancel their subscription, its called a ripple effect kind of like the ALS challenge your bashing. Do you see where I am going with this?….Think about that? I do agree with one thing…We all have the right to support the Charity we see fit at this moment in time…Yet I have never seen anyone with a gun to their head doing the challenge or making a donation to ALS, and I think you would be hard pressed to find the facts to support that video. let ALS have their moment…put your money where you think it should be and keep your pathetic articles off of Magazine Stands EVERYWHERE…Now that’s a Challenge! Good Day and May you never suffer from anything, because your Hypocrisy is torturous and hurtful enough! With that said I have Challenges For ALS to send out and money to donate @www.alsa.org you should try it seems you may need a good cause to ease your tortured conscience. You got your moment of glory when yu got our attention with ths article…Now let ALS have theirs!

      Homepage – ALS Association

      • Well said Vicki, well said. I agree with you 100%!!! It is such a disgrace by what he wrote :-( he failed to mention that there are no survivors of ALS. That the costs for care of a patient is in the thousands, also it most cases the diagnosis of ALS take at least 1 to 1 1/2 year half by then it’s already well in advance stages. He obviously has not been affected by this disease. I could go on, but I just want say, keep this ice bucket challenge going, they need it!!

    • Obviously Mr, Gilmore you have never watched a loved one suffer or die from this dreadful disease.

      • Totally agree Carla, he hasn’t walked an inch in those shoes, if he had this article wouldn’t exist.

    • This article is shameful. Let’s just start with a little “How dare you!” to start the ball rolling. The arrogance in suggesting where people SHOULD donate their money!? Individual priorities influence charitable giving. Not strategy – not playing the odds! How dare you underestimate the millions of people who are actively making donations to this ALS campaign! Do you really think they are giving because of the ice bucket thing? That was just the hook (and a brilliant one I might add). The reason people donate is because they have a heart. They have gained some level of understanding about ALS and want to give. Maybe to support research or ease the burden of families in need…it doesn’t matter – it’s human connection and kindness. The lack of compassion in your article for those who suffer from ALS is so overt…quite honestly it disappoints me that you were allowed to publish the article. Freedom of speech be damned…you’re scoring and measuring the inherent value of human suffering! You’ve got a lot of nerve…

    • Well MaCleans you have definitely not thought this one through. Not an urgent cause? What well educated exec actually sat there and thought up such a stupid derogatory slap in the face comment? If a decease hurts, kills, breaks a family even once. It is an urgent decease. I have heard some real stupid off the cuff things said in my life but to publish that as a main story you should be ashamed. If money is needed more elsewhere here is a story you should write. “Why aren’t the high paid execs from other charities coming up with fundraisers that work?” Then you give kudos to ALS for coming up with a brilliant idea. Disgusting reporting.

  2. I knew we’d hear tut-tutting from a wet blanket sooner or later.

    • Pretty thoughtful and sensible tut-tutting. Besides, he’s hardly the first to point out the issues with this craze.

  3. It is certainly nice to see someone bring some rational analysis to the charity industry. Then Mr. Gilmore spoils my pleasure by spouting nonsense about Ebola being a global health emergency. Well, maybe if we are suddenly to develop a taste for bush meat. Ebola is a nasty nasty disease but fortunately is reasonable hard to transmit. Actual transfer of fluids or flesh is required. There is no airborne transmission mechanism. Accordingly despite having a very high incidence of mortality Ebola killed as few as 1000 people last year. By comparison Malaria, not quite as nasty but no fun at all, killed a 1000 people world wide in the past 12 hours. It would seem that money spent on Malaria eradication is money much more wisely allocated. It is also a much more world wide health hazard. There are over a thousand cases of malaria each year in the US and Europe not only has more cases but also suffers a loss of 100 or so citizens each year. So it is a real world problem.

    But I am not particularly trying to make a case for donating money to any Malaria based campaigns that come along. Personally I expect my government to take expert advice and allocate the appropriate amounts out of tax revenue for each disease. If it is worthwhile do if not don’t. And if they don’t do it right we always have our remedy.

    I was shocked and dismayed when I read the absurd amount that is now going to be frittered away on ALS. But I suppose the whole point of marketing is to encourage the triumph of hype over sense. Why else would anyone pay for a marketing programme? To inform the public? I don’t think so; but if you do I have a very nice only slightly used bridge for sale.

    And as a side note, which will bring joy to the hearts of many Canadians suffering their depredations which often ruin our summer evenings, many of the most effective ways of eradicating malaria involve eradicating mosquitoes. Take that, damn bug.

    • “Then Mr. Gilmore spoils my pleasure by spouting nonsense about Ebola being a global health emergency.”

      Did you follow the link? Then if you weren’t already aware of the fact, you would have seen that WHO declared it an international health emergency. It may not be easy to transmit, but practices within the communities where the outbreak has occurred make transmission more likely than in many other parts of the world.

      Your point about malaria is a good one. However, stemming this ebola outbreak before it becomes too widespread makes solid, short-term sense. We don’t want the potential number of vectors to continue to grow.

    • “Frittered away on ALS.” Are you kidding? Jerk.

  4. This article is extremely offensive and the arguments are assuming and week. I’ll point out a few things. First of all the writer claims that people have limited resources etc… Who is he to speak for other people and their finances?? People can decide for themselves what they can afford, and just because you donate to one charity, doesn’t mean you don’t contribute to another… In many cases people donated $10; I think it’s a little assuming that their donation came at a cost to another worthy cause. Yet, multiply that $10… as a result of a campaign gone viral and you have millions of dollars pooled to help people in need.

    Gilmore then goes on to give the reader three factors we must consider before we donate:

    1. Where is the greatest need?

    2. Where will my dollars have the greatest influence?

    3. What is the most urgent problem?
    And that, “The ALS challenge fails all three of these tests.”
    He goes on to point out the relatively low numbers of deaths and aligns it with other rare diseases, and that, “If you want your donation to make the biggest difference, fund the diseases that need the most money.”
    When looking at a disease, you cannot only consider the limited lifespan and number of deaths, but you must also consider the quality of life that person has while they are alive. ALS is an extremely devastating disease and no one should have to suffer from that or watch a loved one suffer like that. When it comes to funding, more common diseases rake in the funds, and not to mention, they are also highly subsidized by government funding. Rare diseases, on the other hand, get little attention, get very limited funding from the government and in most cases, it is the family and their friends who are the ones raising all the money, and not the general public. So in fact, they are in GREAT NEED for more support. As a result, treatments and cures that could potentially be discovered are not, and these people continue to suffer. In addition, research for rare diseases have shed light on and have lead to discoveries for other diseases that are related and to a general understanding of biology and science… His basic argument here can be summed up as “Well, it’s rare, so it doesn’t matter.” I’d hate to see the day when someone he loves is afflicted with a rare disease…. or he himself… Maybe he would then see the “need.”

    Finally he argues that “the ALS Ice Bucket Challenge is bad for you, and me, and all of us. Instead of supporting what is most needed, we support what is most amusing.” Why does it have to be “instead”?? People are fully capable of supporting more than one cause at a time and in different ways. And most of us do. Those who have only focused on The ALS Ice Bucket challenge, I doubt are taking their energies away from another charitable cause, it rather got them to participate in something meaningful and worthy. And it’s not that we are supporting what is “amusing,” but rather, it’s an amusing way of supporting something important, and it has worked to get more participation.

    Gilmore concludes with: “Bad reasons to donate:
    1. Ice Buckets
 2. Armbands
 3. Mustaches”
    Those aren’t “reasons” to donate, they are tools to help raise awareness so that people in turn donate. And they have obviously been successful.

    My family has a child with a very serious and devastating rare disease, ML4 (Mucolipidosis Type IV). She is no less important than any other child in the world. I have raised awareness and funds for her disease. I have also donated for research for more common diseases. When this ALS Bucket Challenge appeared all over the place, it did raise awareness for the disease and got people involved who might not otherwise have been, like me. I participated and contributed. At the same time, I’ve been quite active in other major events that are going on in the world today. I really don’t think I’m the only one here.

    So, I highly disagree with the points made in this article and I think, actually, if anything is “bad for us,” it is having this opinion as expressed by Gilmore, and trying to influence others to have it. Half of my family died of different cancers, heart diseases, or live with other common diseases. Yet, I would never tell anyone not to contribute money to a rare disease. It is saying those people don’t matter. It is a very short-sided, greedy, and ignorant opinion.

    • SO well said!
      I volunteer with ALS Canada and we struggle every year to come up with ways to raise awareness in our community. I don’t think we’ll have as much trouble this year! That being said I know people who have lost loved ones to this disease but I myself have not. I still donate because one day I could be one of those people who is on the verge of losing myself or a loved one to ALS.
      I give money to fight, Liver Disease, Breast Cancer, Parkinsons and Heart and Stroke because I have lost loved ones to all three. But I also give to donate to mental health, natural disaster funds and various other things. I’m in no way rich, I in no way can fund these things on my own but I recognize that in the end the benefit of some will be a great benefit to many!

      I wonder if this “Former Diplomat” is anti-donating when you get something in return such as a sticker, bracelet or flowers!

      • Thank you MPREECE and keep up all your hard work!!

    • Do you know someone who has unlimited resources? Seems to me the notion of “limited resources” is a universal truth and a basis for all economic theory. Perhaps you’re taking the word “limited” to mean “little.” But that’s a misunderstanding. It means there are limits to the funds anyone has — be it a lot or be it a little — and that we all make decisions with what to do with our resources.

    • Thank you for your comment. I also found it offensive, not only because I see the effects of ALS to a family member, but becuase this is not only about ALS but also other diseases that are not visible and equally devastating.
      People have the right to support and donate which ever cause they feel right to do so. I wish people who follow this kind of articles also take the time to read well said comments like yours and get infomed of what this is all about

    • I too am offended. I will decide how, and to whom, I donate my resources – end of story. I can choose to be rational or emotional – or both. It simply none of your business.
      Thankfully…THANKFULLY??? Only 600 people die every year from ALS??? There is nothing thankful about that. I have personally watched people die from ALS – it is a long and horrendous death. Many of those common diseases you speak of are very preventable if you make good decisions about your lifestyle. You have no choice with ALS.
      I will likely donate to each of the above causes, and maybe the local rink and Girl Guides as well. Its frankly none of your business.
      Mr. “Diplomat” …you could have made your point without attacking specific charities or those of us who elect to donate.

    • Apparently you both missed the point of the article and have a very misguided understanding of charity and the economy in general. Let me break down some simple math for you. $70 million raised for ALS = saving 600 people at best. Let’s be super generous and say that the research will result in us making scientific breakthroughs and managing to save 100 times as many people. So we are tlaking a very generous 60000 people that will be helped. There are hundreds of millons of people in the world right now whose lives could probably saved for about $10 each. Many vaccines only cost this much, as well as simple things like tablets for cleaning water and food. Look it up, the most destitute people (believe it or not they are way way WAYYYYYYYYYYY worse off than anyone with ALS or cancer or any other western middle class disease) need about $10 to save their life. So let’s see, $70 million divided by $10 is… 7 million. That’s right, 7 million people. Well I’m no utility calculating genius, but somehow I think that the money might, just MIGHT, be better spent saving more than 100 times as many people. And let’s be honest, I was way too generous with the 60000 number. Realistically it is 600, which means that by spending the money in a better way we could save 10000 times as many people. I’m really not sure how you can argue with this. Go ahead and give it a try. Nobody on the face of the planet can, with a straight face, say that it makes more sense to save 600 people than 7 million. Not sure how you got anything different from the article, but to help out the author I have just spelled it out for you.

      People have more money to donate to many things you say? Doesn’t matter, regardless of the amount of money, it is still better off going toward the poorest most destitute people until they are all saved. Then we move on to the people that need $11 to survive, then $12, and so on until we get to the 600 people who die each year of ALS. The point the author was trying to make was that ALS is probably down somewhere at about 5000 on the list. Our dollars will stretch much further in helping people with about 5000 other causes before we get to ALS. So go ahead and donate $100 to ALS and pay for one researchers wages for half a day, or save 10 people in Africa from certain death. Donating to ALS because you know someone who has it is a bullshit reason for allowing 10 people to die instead. I have worked doing fundraising for charities and I work professionally as a social worker. To this day it blows my mind how many people don’t understand this incredibly simple reasoning that I have just outlined. This author explained it pretty well and some dunces still apparently don’t get it.

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        • I think you still don’t get it. Nobody is telling you what to do with your money. Oh course you have the right to do as you want with it. That’s the problem in fact. Good moral people such as myself are forced to sit idly by as morons such as yourself spend your money in the dumbest and most irresponsible way, because that is your right. The author isn’t telling you how to spend your money, he was just accurately pointing out how ignorant and terrible of a person you are for wasting money that could have been spent saving thousands of lives.

          • Let me get this straight. You’re not telling me what to do with my money, just that I’m “ignorant and terrible” for supporting a cause I believe in. Where do you get the idea that giving is a “zero-sum” game. I can give to ALS, support MS (I walk every year and raise money), give via Heifer International and Samaritan’s Purse. Just to give to support ALS research and support caregivers and patients doesn’t mean I can’t put money toward other causes. And it’s none of your d88n business if I choose to do so. How arrogant and insensitive you are.

      • 600 people per year are too many!!! If one of those 6 were your Mother, sister, husband or friend would a cure be that expensive for you? Have fun sitting in your ivory philosophical, mathematical tower. I cannot believe such words can flow from anyone with an oz. of compassion.

        • You don’t get it. We don’t have the funds to save them all. How can you say that 600 is too many when we would be sacrificing thousands millions of people we know we can help? Millions are too many. Of course we should save as many as possible, but that is the point. You keep thinking that somehow we have enough to save everyone. We don’t. So shouldn’t we save the most? If you were in a hypothetical scenario in which you only had time to dismantle one bomb and you could dismantle the one that saves a whole country or one that saves a small village, which would you choose. This is the scenario we are basically in.

      • Is it bad to raise awareness? Where in the ice bucket challenge does it say that you must donate money? You can choose to do the challenge or donate or do both. In this case the millions of dollars raised clearly show that your kind of BS walks and money talks. I watched a dear friend take his last breaths from this devastating disease, it took 18 months from diagnosis to the grave. So, before you say I don’t get it, most likely in your condescending and arrogant tone, I do get it and I don’t give a rats ass what your opinion is.

      • No, people understand they disagree. Since you want to use an economic argument, let’s start there. First, classical economic theory. A charitable donation is an exchange of value. Rational actors are spending their money in a way that they, not you feel best. If they would rather save their neighbor than two people of your choosing, it is their money. If they VALUE research and its long term betterment of society over immediate consumption, again their choice. If they believe that their money spent on ALS research has the potential of solving the problem, but the problems of Africa are unsolvable , that is their judgement. The author conflated charitable donations with spending to make it appear as though ALS was receiving a disproportionate amount of research spending. He ignored the fact that donations are a principle source for ALS research funding, but a trivial proportion of the funding for ” major” disease who get their funding from government and pharmaceutical investment. This is a very complicated issue for which the author constructed a straw man.

      • what arrogant jerks some people can be , both scott and you , philosopher!!!! LOL
        obviously intelligence is not needed to be a philosopher, just a computer and an opinion.

    • Thank you Thank you Thank you for saying everything I wanted to say – my child also lives with a rare disorder and I don’t care what the ‘tool’ or ‘gimmick’ would be that would generate the funds and awareness for the disorder we live with every day.

    • What?

      “I’ll point out a few things. First of all the writer claims that people have limited resources etc… Who is he to speak for other people and their finances??”

      Uuuh….People do, in fact, have limited resources. And, while you may think I am the devil re-incarnate for saying this: Saving hundreds would be more important than saving one (to whatever exponential degree). The author’s opinion is not short-sighted or ignorant. You are the pot calling the kettle black. The cure for any disease is of the utmost importance. However, I would think eradicating a contagious disease is of higher value to world health.

  5. I can see why perhaps you are a “former” diplomat. What a self serving and ignorant article. If anyone in your sphere had suffered this disease you would never have published this hurtful article. This disease is systematically killing off the women in a family close to me….so pardon me for applauding every silly ice video. This week our Aunt died of this disease. I assure you this woman will be missed. The school she was instrumental in starting in Africa will surely miss her. But gee don’t I feel stupid for giving of my time and money in Whalley B.C. In the hopes that even one person gets clean and off the street…gets their kids back. I guess my Momma taught me just a bit differently than yours. I believe that each life is precious. I am sorry that enough people are not dying of this disease for it to matter to you. There are no shortage of good causes…cancer has had my heart and money for years…even before my Dad died. I love Hope International and clean water…I have 2 kids with Compassion and 2 in Uganda. I even support heart and stroke even though a good number of people I love die of those things through poor choices. ALS comes without a choice…no amount of kale salad or lack of cigarettes or booze will keep you from getting it or dying from it. So keep your criticism to yourself whatever your agenda. We don’t hear you above the rush of ice past our ears…

    • I heard his comments, and found them quite thoughtful. I’m not sure why some people are taking this article so personally. He didn’t say “don’t give to ALS research.” But he’s simply pointing out that in the large scheme of things, it’s not the greatest threat to human life. I think the bigger issue is that there are so many other diseases that get much less funding on a per-capita basis. I’m sorry you lost your aunt to the disease, it’s a terrible disease. But that doesn’t mean that we can’t discuss and think rationally about where we commit our resources in the public health and research sphere.

      • ALS is finally getting some well deserved attention and many people just what to rain on the parade. Billions of dollars are spent on cancer and aids research every year and progress is being made. Why can’t it be the same for ALS? I am willing to bet if the negative people understood ALS better they would have a greater understanding of the disease and why it is important to people with ALS and their families to have a cure.

        • Wait, you really have to ask why ALS can’t have the billions of dollars HIV and Cancer Research get?

          35.3 million infected with HIV in 2013, 1.6M deaths from HIV/AIDS related illness . Cancer? 8.2 Million in 2012. ALS Even multiplied 5000 times won’t even touch these numbers.

          While ALS Is a horrible crippling disease, that doesn’t mean in the grand scheme of illness’s that it’s more important that curing cancer and a multitude of other diseases. And ALS may not be in the spot light, but it gets plenty of funding per capita even before this campaign

  6. It is not difficult, one decides which charities to donate to and stick to those charities. OK every so often a charity (always a main stream charity) might attract your attention for an additional donation but apart from that charities need some sort of expectation of what they can raise on a regular basis. Hopping from one to another is financially insecure for all charities and benefits no one

  7. This looks like a slick marketing campaign but I only donate to local charities that I can track my dollar and see if it is actually helping those in actual need.

  8. The ice bucket challenge has shown me fund raising can be fun, it’s also taught me about a disease i knew nothing about, and it’s raised over $70 million so explain where it’s bad? If all the money saves/helps one person is that not a good thing?

    I think your problem is due to not getting nominated as you have very few friends!!

    • um, considering that we could save about 7 milllion of the porrest people in the world from certain death with $70 million, saving one person is bad. very very very bad. are you mental?

      • *um, considering that we could save about 7 million of the poorest people in the world from certain death with $70 million, saving one person is bad. very very very bad. are you mental?

  9. This isn’t mearly about raising money, it’s also about raising awareness. I volunteer with ALS Canada and every year we have people ask what ALS is at our walks. Also thebwalk grows as more and more people are diagnosed.
    Research is expensive and needs funding of course but the money also goes to assist families with the financial burden that ALS presents. It’s not simply a matter of meds it’s equipment, communication devices.

    Yes there are a lot if really terrible diseases and perhaps you’d be writing an equally ignorant article if this challenge had been for one of them. Some people just can’t help but turn everything negative.

    I’m so pleased to see this campaign doing well because besides the money and awareness it is giving people hope, something that didn’t really exist before.

    So love or hate it… Deal with it!

  10. Check your premise Mr Gilmore. Your article was not very well thought out. Who are you to assume my reasons for getting involved and donating to this cause. And why are numbers of deaths a precursor to the worthiness of a cause or donating to it? I wonder if it was your loved one suffering from this disease (or another rare disease that the public knows little about) if you would feel the same way. Shame on you. Oh and by the way, heart disease, check out our diets for the cure to that one.

  11. WOWWWWWWWWWWWWWWWW.. you have NO idea.. have you ever watched someone die from ALS… obviously NOT… as someone who watched my father in law die of this disease.. and been volunteering for 14 years with ALS CANADA.. you have NO idea.. this ice bucket challenge was started not by the organizations but by an ALS patient hoping to raise a little money and awareness. thanks to social media it has exploded. and it is AWESOME. The lack of funds and awareness before this was pathetic. Before this There is no funding for research from government or major places. All money has come from families affected by this.. over 3000 Canadians live with this right now and will die.. no that doesnt seem like a lot but hey if EVERYDAY 2-3 die.. that means the numbers arent staying high.. because they die before the next person is diagnosed. you dont think that 3 people every day dying is worth figuring this disease out. You are blessed because you havent been around this disease. Watching people you love die a slow death. ( like living in a glass coffin) you have no clue ( which is a good thing because it means you havent been around this horrible disease).. as a CANADIAN magazine.. why are you quoting american stats.( based on funding) look at the Canadian donations to ALS. and the other aspect because the patients die so quickly ( death sentence avg 2-5 years after being told you have it.. and some die within months.. no rhyme or reason who , when how long ) there isnt alot of studies because the patients die before anything is complete. so alot of this money goes to help families.. on avg it can cost a family anywhere from $100,000 to half a million to care for the patient with equipment that is needed.. again .. these funds have come from those raising funds for ALS.. not any where else.. why.. because people like you think it is a RARE disease.. who cares if it is a rare one or not.. seriously.. are patients with ALS and their families not worth donating to because it is rare.. YOU have missed the boat on this article . I find it hard to believe that you are diplomat as most diplomats are caring and compassionate. You have Neither. ALS is a charity that DOES need the funds… I have never seen such donations in my time with volunteering with them. IT IS about time. Now maybe some results can be done.. thankfully most people are NOT supporting your view and some changes will be made. You say that urgent needs.. well those living with ALS it is an urgent need. Shame on you for your absolute ignorant article. Go spend some time with a family living with ALS and Im sure you will really see why this is an urgent need.. go see the young mom who cant hold her child and wont be around to watch her kids grow up, go visit the young dad who will likely die shortly after his baby is born, go visit the granpa who retired so they could enjoy life only to be told they now have ALS and will die shortly, go and visit ALS patients of all ages and then tell me it isnt worth it. check out http://www.als.ca and really get your facts and information . and to all who are doing the ice bucket challenge.. thank you on behalf of someone who has seen for over 14 years what this disease does to families. ( and if you so inclined come on out to the Quinte Walk for ALS in Belleville on Sept 20 .. and if it is so rare why is there currently 14 families living with it in the area ( to go with the over 40 other families that we know of ) based on stats.. in our area we shouldnt have more than 3 people at a time .. well stats dont always tell the story. KEEP DONATING and yep have some fun with it and do the ice bucket challenge. rant over

    • I don’t think that he is questioning the suffering of ALS victims and their family and friends, he is just pointing out the obvious. There are lots of diseases that are horrid and have little funding to do the research to discover cures (and there are los of diseases, such as breast cancer, that have more than enough foundations to donate to and products to buy). That’s life.

  12. Dear Mr. Gilmore,

    I work full time, I am taxed approximately 45% of my income and I don’t appreciate someone tell me where to spend my money. If I want to make a silly video and donate to a cause, then I will do it. I don’t care if you feel strongly about your causes; DON’T PUSH THEM ON OTHERS.

    Cheers to people getting involved and putting their hard earned money into a charitable cause and not an item of conspicuous consumption.

    • I think he was just pointing out how dumb you are for choosing a cause that will save 1 person instead of 10000 for the same amount of money. He isn’t telling you how to spend your money, just showing you how dumb and terrible of a person you are for letting 10000 people die so you can save one person with ALS. That’s all.

      • It is not our job to save everyone in the world. It’s called population control. I just think it’s funny that the author assumes it is our job to take up where other governments have failed in helping THEIR people. I think sometimes there have to be consequences for an action. But that is as far removed from this scenario as it can be. There is a difference in viral, communicable diseases, and diseases that mutate in the body or are genetic. Ebola vs. ALS is kind of an unfair comparison to draw. That being said, it is the right of the giver to decide where their money goes. To say that 600 aren’t worth saving over millions of others is ridiculous. Neither you nor the original poster is God and you do not get the right of choosing who is worth saving. Some of the same people who gave thousands to the ALS foundation are also giving thousands towards the very issues that the author named. There is no one life more important than another. Someone dying from ALS is just as important as someone dying from Ebola. It’s easy to agree with the author when you’re just looking at numbers. I dare you – and the author – to go out and volunteer to work with those that have ALS. I have taken care of a man very close to my family that died of this disease. Go out and take care of them and talk to them, and understand their pain. Then and only then do you get to come back and tell us where our money is better spent.

        • It is unbelievable to me that you still don’t get it, the reasoning is so crystal clear. It doesn’t matter who I know and who I have taken care of. I’m a social worker, I have helped people of all different walks of life. It is a numbers thing. You are right, no one life is worth less than any other life. But 10 lives ARE worth more than any one life. This is indisputable and nobody on the face of the earth with half a brain would argue against this. Once this point is conceded, the rest of the argument follows. Making all these distinctions between causes of death has nothing to do with this. If a dollar can stretch further in ANY OTHER way to save and improve lives, then we are morally obligated to spend the dollar that way instead of a less helpful way. In one breath you are talking about how every life is worth saving and then you dismiss the lives of people in other countries as if they are worthless. I’m not choosing who is worth saving, I’m telling you that saving MORE PEOPLE is always better and this is an indisputable moral fact. Sure, we can donate to multiple things, but at one point we run out of money, and if we wanted to do the most moral thing and save the most people, we should have donated ALL of our money to the cause that would save the most. Only once we have saved everybody from the cheapest solution does it become justifiable to move on to saving people who cost more to save. It doesn’t matter whether you already donate $1000 to providing clean drinking water; if there are still people dying of not having clean drinking water, which costs very little to provide, then any money you can still give should go there until that problem is solved. By the way, just using that as an example, I’m not sure if providing drinking water has the best dollar to live-saving ratio.

  13. God forbid somebody in Mr. Gilmore ‘s family or circle of friends is diagnosed with this horrifying, devastating disease. It would be terrible indeed, but I must say I’d enjoy (immensely) watching him take the ‘Foot in Mouth’ Challenge.

    With that said, I’m quite surprised Macleans would actually publish this garbage, especially following the very informative article by Kate Lunau they published back in March, about the fact that ALS is on the rise: http://www.macleans.ca/authors/kate-lunau/understanding-als/.

    • If my own family member was dying of ALS I would still donate to save the lives of 10000 people instead of the one family member. It’s called ethics, look it up. Your argument is a fail.

      • And which school of thought within the rather vast sea of ethical studies, should they be looking up exactly? I mean short of having a reference document available that was published by “The Philosopher” for the perusal of the masses, making a statement like that really does smack of arrogant elitism. Sure, YOUR ethics might dictate that you “sacrifice the one to save the many”, but that is by no means the definition of ethics.

        Your opinion on the situation and that you see the argument as a fail, is duly noted mind you.

        • It isn’t an opinion, it is a fact. I am well aware of the wide array of moral theories that exist, I have studied ethics heavily and am an expert. I wrote a thesis on ethics. Every ethical theory there is would argue in favour of saving thousands of lives over 1. I am not going to write you an essay here explaining this as it would be dozens of pages long, but rest assured, there exists no moral theory that, if interpreted properly, would support saving one life over many.

    • So because someone in your circle is diagnosed with ALS, it automatically and justifiably has top priority over other diseases in the world? Maybe to you. To everyone else? No.

  14. Maybe it is because of these donations they can find a cure for this horrible disease. This “amusing” Ice bucket challenge has raised awareness to a very scary and debilitating disease that needs our attention. All of these ailments need our attention but for the people suffering with ALS; they in my opinion are worth every ounce of the attention this has been given. I just sincerely hope that the majority of the money is going to the cause rather than red tape and admin like other popular fund raising campaigns.

  15. Agree – I think a lot of people do it so that they have a picture for Instragram or a video for YouTube and they too can be ‘famous”. It is nothing but another form of slackativism along with those bloody hashtag signs. Just donate money – there easy!

  16. Scott Gilmore your statistics on heart disease research are way off. You said:
    “Heart disease, by contrast, killed 596,577 but only raised $54 million ”
    The American Heart Association is the 2nd largest non profit in the WORLD.
    In 2012-2013 it had $683,538,000 in revenue.
    (source: http://www.heart.org/idc/groups/heart-public/@wcm/@cmc/documents/downloadable/ucm_460995.pdf)

    We in North America are highly privileged and I doubt most people’s donation budgets for the year are $100. Even if it was, the reality is that people aren’t going to donate that amount to ALS every year. If their donations top $100M this year, next year it will deflate down to normal. The “real threats” you refer to have a tonne of funding. The world is so filled with violence, hate and selfishness. When it finally comes together temporarily for a good cause, it should be celebrated and encouraged.

  17. The reason ALS fails your 3 questions is because they are the wrong questions
    1. Where is the greatest need?
    2. Where will my dollars have the greatest influence?
    3. What is the most urgent problem?

    Proper questions would be:
    1. Where do I think the greatest need is?
    2. Where do I feel my dollars have the greatest influence?
    3. What is the most urgent problem to me?

    And who do you think you are telling me which charity fits those 3 questions?
    I can donate however much I like to whatever charities I want. I can donate nothing to all charities if I want. This is not your decision, this is mine. Maybe other charities should come up with more positive and fun marketing strategies. What is wrong with having fun in the absence of sadness and helping a cause… any cause… doesn’t matter!

    • No, see he wasn’t telling you how to spend your money. He was just telling you how dumb and terrible you are for donating to a cause that will save 600 people as opposed to one that will save 7 million people in the third world.

  18. The most frustrating thing is it started as a general charity thing. The challenger was supposed to decide what charity they wanted to donate to. It makes me quite angry that all that money went to ALS, which doesn’t really need it, instead of making money for multiple different charities. Especially when the latter was the original point. As you say, people have limited charitable dollars and they should have gone to more than just this one.

  19. If I understand correctly, this article amounts to advice from a self-appointed moral money manager, to help us direct our benevolent efforts appropriately.

    Like Dear Abby, for charitable donations.

    Too bad my number one reason for donating to ALS.ca, namely, the fact that I lost a friend to the disease, doesn’t add up.

    Thankfully, I decide for myself what I do with my money, and why.

      • God help you when you one day lose someone you love if they die of something rare. If you live in North America they will not die of hunger so if it is not cancer…it wold be considered rare in your books. You must live alone and have a very sad existence sitting around reading Nietzshe. Have some respect for people who have worked for this cause and are having a moment of success. When bandaid has its huge success in the 80’s we cheered. Cancer….we cheer. Aids….say no more. No choice, no hope…no cure…and it is not a worthy cause?

        • Why is everyone using the premise of “having someone close to you” and using that to justify its importance over other known threatening diseases. This is nothing but poorly thought out logic. From that logic, should we conclude that we should only donate to charities from which we are closely affected regardless of the number of individuals actually being affected by the disease?

        • Ever cause that helps people is worthy, but the point is that we have limited resources to help people and we have to make a moral judgement as to where to spend of resources. It is really that simple. I’m just thinking clear-headed about it and you aren’t. Maybe that is because I don’t know someone dying of a more rare disease. Maybe I would be more swayed by emotions if I knew someone dying of ALS. I’m not sure. All I can say is that in a clear-headed state, the right choice is to spend my money saving millions instead of trying to save my own one family member. Of course it would be heartbreaking, but it is the right thing to do and my own mother would tell me to spend the money on other people if she had ALS because she would also do the right thing and she taught me how to do the right thing. It isn’t that I don’t care about people with ALS, it is that I am forced to make a moral decision as to who I can save with limited resources, and I choose what seems to be the obvious choice to me: saving way way wayyyyyyyyy more people.

  20. The most useful part of this piece is the notion that we are not rational decision-makers when it comes to spending charitable money, or any of our money for that matter. It would be easy enough to modify this “helpful” list slightly and say we should not spend our money on anything without considering personal 1. need, 2. impact, 3. urgency. We don’t do this though. We are swayed by our wants. This article is light and ignores the admitted truth – we’re not rational. Perhaps another go of an article on that topic? What’s the ‘why’ behind this now nearly 80 million dollars?

  21. I have a challenge for Scott Gilmore. I challenge Mr. Gilmore to read his article, in full, to a person with ALS. I challenge him to explain to someone with this terrible disease how being in the fore front of people’s thoughts for once is a bad thing. I challenge him to explain how they don’t deserve the charity dollars they are getting and explain why there is no need or urgency to find a cure for this illness.

    • I have a challenge for you. Go to some super poor country and explain to them that it was more important to save this one person you know with ALS than to save their entire country. Explain to millions of people that since you know this person with ALS and you don’t know them that somehow that person’s life is worth more than millions of people’s lives. Explain to them that they don’t deserve to be saved. I dare you.

  22. I am So thrilled to see this in writing – I’ve been trying to tell people this for days (the length of this craze) – pour ice over your head, get a bizzilion hits on your vine – whatever, but I implore you to think about where to donate your money – hungry children is a personal fav!

  23. I think this articles’ approach of putting one horrible disease against others is sick. It’s all fine and good to want to shrug off ALS until you know someone/become someone/love someone diagnosed. All of the other diseases (like heart disease, cancer, AIDS) already have methods of treatment that are generally successful AND are supported by big pharma. Because ALS is rare, no one is willing to invest it in. That means not only a death sentence to those diagnosed but a torturous, undignified death. I am happily supporting those who cannot get support. I’m signing a cheque for those who no longer have the use of their hands. #HaveAHeart

  24. This is blatantly disingenuous clickbait. The ALS Association created a genius marketing campaign that raised awareness and reaped handsome rewards for their cause. I’m sure there are more “worthy” causes, and these causes are welcome to create their own viral marketing campaigns. There’s room for everyone in this boat.

  25. I’m very happy that awareness of a horrible disease has been raised. It’s great to see funds being raised “for a good cause”. I do, however have a problem with the knowledge that the real recipients of benefit of this campaign have been so called “non-profit” charities whose main priority is to fund-raise for salaries of their employees and so they can afford to do more fund-raising. I know that a very small amount goes to actual research or patient care. Maybe this hype will get more people to take a closer look at where their charitable donations are really going, but I doubt it–not nearly as much fun, right?

  26. so, I guess this Scott Gilmore, the writer of this piece in McLean’s magazine is not a fan of the ALS Ice Bucket Challenge! Well, suck it up butter cup! Your point of view certainly would be changed if you had a son, diagnosed at the age of 35, in the prime of his life with a wife and 3 very young children! That was 5 years ago! Our grand daughters do not even remember what their father’s voice sounds like! They are growing up with their father trapped inside a body that does not work, he has to have absolutely everything done for him, the only thing he can move by himself are his eyes! Try sitting strapped into a chair for hours on end and you can’t do anything for yourself, try sleeping in bed where you can’t move unless someone gets up and moves you, try talking with a mouth full of large marshmallows and see if anyone can understand you, try doing anything when not one muscle will move in your whole body! You just sit there patiently waiting for someone to give you a drink……………..all the time your mind is completely alert and working just fine. Our son is trapped inside what used to be a very productive, muscular body, healthy body! Are there other charities out there that need money………yes, I don’t deny that. My husband and I have supported all those charities before and still do! Both my parents died of one form or another of cancer, I have lost relatives to breast cancer, heart disease, strokes and many other fatal diseases. To say they are more important than ALS………..well, I guess that just depends on what side of the fence you are standing on! I find this journalist very small minded and short sighted! To say that one disease deserves it more than another is absolutely absurd! To say that ALS is not an urgent need…….I think your mind would change if you were the one afflicted with it! Personally at the moment I am more into ALS than the ebola epidemic, Syria or the Central Africa Republic who are quietly bleeding to death. This is real and this is in our family and community!
    Is the Ice Bucket Challenge a fad………….likely, so why put it down? Let the foundation raise just as much money as they can trying to defeat this horrible disease while they can. After all, Movember is supported, Breast Cancer is supported, Heart Disease is supported and so on and so forth!
    Am I angry over this article…………….YOU BET I AM…………THIS IS OUR SON YOU HAPPEN TO BE TALKING ABOUT! Saying it does not matter, not important, a fad, what every you want to call it…………..to says how small and closed minded this article is! I would never say one disease is worse than another………..just depends on which disease you are dealing with at the time.
    As for me, my husband, our family and friends………..we will continue to support ALS as best as each of us can. We are again doing the walk in London for the 5th year running……..I always like to say to people when they sponsor us “I don’t care the size of your donation, I hope it is that dollar that is responsible for the treatment and cure”

    Sorry………..really had to vent over this one…………just makes my blood boil when we have son suffering from this disease, his wife doing her best to cope and keep life somewhat normal for her family and the rest of us feeling totally helpless! To say this disease is not important……………just rattles my chain!

    • Terry, I would like to offer you my condolences. My father passed from this horrific disease recently and I can only imagine how much worse it is for you as a parent and grandparent to be a part of the suffering. The ‘philosopher’ has no idea what he’s talking about. To suggest that I want to take money away from other worthy causes or that I don’t care about people in other parts of the world is ludicrous. I have and will continue to give to these causes. The point is that more attention for those suffering with ALS and their families – as well as real money that can hopefully find a cure or at least some treatment – is long overdue.

  27. I don’t like the idea of this person talking about the greatest need or the most important need. Yes someone pointed out he’s not saying to stop all donations to ALS, but this author is suggesting he knows what the greatest need is. I think a good reason to give is because a cause is important to you, not necessarily because X number of people are suffering from it. Theoretically I could live in a place where 90% of the people have ALS. The greater need would then be to donate to ALS. But what if I, or a family member was dying from Ebola? Then it would be important for me to donate to Ebola. It is true we should never act because of a fad; otherwise when that fad fades so does our interest in the cause. Selfish as it is, we should act because it’s important to us, not because it’s important to someone else or because it’s trendy. It’s something that moves us personally to do something. And because it’s personal the drive stays longer. If that drive moves you to dump a bucket of ice water on your head to raise money for what you believe in, than so be it.

  28. HOW can you tell people that the IceBucket Challenge is bad for you??? Seriously, you tell the rest of my family that it is bad for us (and by the way, I’m from Canada and living in PA). My dad passed away from ALS 25 years ago at the age of 59. It is a horrible way to live the last 5 years of life. Have you even looked up the symptoms and seen how it is effecting Peter Frates who has been the inspiration for this cause. YOU tell him and his pregnant wife that the ice bucket challenge is bad!!! I read your statistics about how many people are affected but that does not mean its less likely that it will affect you or your family. I really am ASTONISHED that a magazine would publish a story like this, had it been the heart foundation or a children’s hospital or any other charity that had been the charity of choice I would still be angry at the story and insinuation that ANY charity is not worthy. Is it not worthwhile to wipe out a disease than to stand by and watch someone die! Mr Gilmore were you just a little off this day or is watching people dump cold water on their heads getting a little old for you. I would like this story pulled off it is offensive to me and to all of humanity!

  29. While you may or may not have a point I find your presumption of authority to dictate to me the criteria for choosing how to give my charitable dollars highly offensive.

  30. Sorry Scott, but I couldn’t disagree more. While I understand your point, and the need to take a good look at where I want to spend my “charitable contribution” dollars, I take issue with the fact that you seem to think that you can arbitrarily decide whether there’s a need, or any amount of urgency.

    Tell that to this guy, and his family.


  31. Insulting. Assumes that those doing this challenge are mindless and heartless, only seeking attention. Actually, it is pretty brilliant that so many people are awake and engaged, especially in regards to this devastating disease. “Fund the diseases that need the most money” is truly one of the cruelest comments I have ever read. So Disrespectful and alienating, if anyone with ALS or a loved one with ALS reads this, please know that many of us who are doing the ice bucket challenge (making a donation and having some fun at the same time) are doing it for YOU, your life has value to us.

  32. I would argue that there is no such thing as a bad reason to donate. The money being raised with any of those marketing gimmicks was in most cases, not likely going to anyone save coffee shops, fast food, snacks and other such indulgences. It is very doubtful that anyone said “Holy crap, what is this ALS thing and why have I been giving to Heart and Stroke?!? I have to stop that donation and switch to this one.” If this article is, and it most likely is, simply a way to gain some attention for yourself and incite backlash… well played.

  33. This article has made me seriously disappointed in Maclean magazine for wasting their established name on such trash. I find it interesting that the writer has no problems tossing around stats the whole way through, but forgets that most people donate money because they have a personal connection to the cause… Or because they want to be a part of making a difference… or merely because they have a heart.

    I find it interesting that not only does he tell us where we should donate our money, but that we should consider donating to a disease that is preventable. Now, I am all for donating to where ever your heart desires, but to take a page out of his book and to quote CDC, “at least 200,000 deaths each year from cardiovascular disease could be prevented”. For me, I choose to support those that are dealing with devastating life changing, incurable, unpreventable, and fatal diseases.

    Mr. Scott Gilmore I sure hope that ALS never impacts your life… Then again maybe by then there would be a cure to save your insensitive ass… And why? Because of the generous people that have donated over 72 million dollars to help find a cure for ALS. Hopefully, they all don’t think it was a waste of THEIR money to find a cure for someone as inconsiderate as you.

  34. A) I’m not seeing why this is bad for me like the title suggests.
    B) No ALS group actually came up with this stunt – it was made by a college kid on the US eastcoast.
    C) Being that it got a lot of people very charitable is amazing! It’s not something you see everyday, even if it’s this journalists disease of choice to fund. It’s an ugly disease, regardless. Who’s not to say we’re going to defeat the lower-population diseases before the others?
    D) If people weren’t getting some education about this disease, I don’t think it’d have made this much. Also, you think people vote for their political leaders knowing all the facts? I hope a future article from this journalist will read “Why you should never vote.” (as well, see point B about knowing your facts before getting involved.)

    The title of the article brought me in to learn but was overhyped in what it brought to the table. I was ready to find some real reasons and wasn’t convinced.

  35. This is the most condescending asinine thing I have ever seen posted on Facebook. Talk about self indulgent. I know there are a lot of people out there who give money to multiple charities so the finite resource thing is crap. The point that there is more genuine need is also silly. Tell that to someone with ALS who likely feels there is a need. The rarity of the disease to me also implies that the resources there are are few and far between. In any case comparing the diseases in such an over simplified way is not an accurate picture and quite pedantic. Donations per person with the disease? Really? I know someone who died of a heart disease two years ago and I know that were he alive today he would be all over this campaign. They are brilliant and raising awareness and money and they are doing a damn good job. ALS is a horrible disease that kills slowly and with a lot of suffering, so what if the money is raised with a gimmick, if those people will be helped. I know you think you are dropping some truth on everyone and educating them but what you have done is skew numbers and put a negative spin on something that annoys you. None of this is sound logic. It sounds like sour grapes, negativity and condescension. You should be ashamed of yourself.

  36. Mr. Scott Gilmore,

    First off, I don’t blame you for this article, I blame your bosses for allowing it to be published.

    To everyone else, as a Canadian, I naturally feel the need to apologize for things that aren’t my fault, and after reading this, I feel the need to do so. I apologize to those that read this outside of Canada, and somehow think that this is what Canadians feel about the ALS Challenge and the awareness it is raising across the globe. Please know that those that donate to this cause, and any other causes, do so willingly, and freely, and are not easily swayed by marketing gimmicks as Mr. Gilmore suggests. We Canadians are actually quite intelligent, despite this article which would lead many to believe the contrary. Mr. Gilmore is a minority in his opinion.

    I apologize that this horrible article tries to use statistics showing that one fatal disease warrants more research over another, and that a dollar value per person that dies per disease is somehow a justification to rethink your donation or question your right to donate. Canadians feel that all diseases that kill innocent people are bad, regardless of the name of it, or how many people die from it. Those that have to live with their loved ones dying of them don’t draw on statistics to feel comforted, I’m 100% certain of that.

    I apologize that a very small and simple minded individual was given a forum to take a positive and turn it into a negative. I regret to say it, but I think someone needs more hugs in their life.

    Finally, I apologize to Maclean’s, as I fear the next time I visit the bathroom, I may have to use your magazine as toilet paper instead of reading material, as if you’re allowing articles like this to be published, that’s all your magazine is good for.

    • Well said Brad Humbert….this is not reporting the news this was a horribly biased piece of writing with an agenda. Maclean’s needs to issue an apology. No more subscriptions for anyone in our family and hundreds of people that I know. But then I guess that is the point – I get to chose how to spend my money.

    • If us Canadians were so intelligent then we would donate to something that would save millions of people instead of a small handful. Any way you twist it, it is a simple and straight-forward moral decision: we have limited resources and we have to spend them efficiently to help as many people as possible. It is perfectly normal and great to have compassion for all people including those with ALS, but the right moral decision is save more people. THIS is the point he was making and nothing you or anyone else on this thread have said defeats this argument. If you save one person instead of millions you are either very unintelligent or a morally bad person, hands down, indisputable.

      • Here we go again…

        Indisputable to YOU, based on YOUR particular flavour of normative ethics.

        You are quite correct that the argument raised in the article comes down to an individual’s decision based on moral grounding and values. Everything after that falls into the realm of opinion, because I guarantee you can’t nail down “If you save one person instead of millions you are either very unintelligent or a morally bad person…” as indisputable fact.

        Your opinion on the matter is however, duly noted.

        • Actually I CAN make a sound argument for that, and I can show you how every moral theory ever conceived would support it. Morality isn’t about opinion, it is a science like anything else, and you can be objectively morally wrong or right. Unfortunately most people don’t get this and it is generally what leads them to do horrible things and think that somehow it is okay because nobody can prove they are wrong.

  37. Well if he was diagnosed with ALS I’m pretty sure he would be sining a different tune. These people are suffering and need our help. Regardless if there isn’t a huge amount of people who have ALS. It’s better to find a cure now than have the numbers grow in the future, that’s what he’s not getting.

  38. You seem to contradict yourself in this article. You compare the ice bucket challenge to other stunts, namely Movember and Livestrong, but go on to imply that, as one of Canada’s biggest killers, cancer is more deserving of charitable donations. Both Movember and Livestrong are charities that benefit cancer research, so presumably you think these stunts are more worthy than ALS’s?

  39. Are you kidding me? Seriously because it’s not a cause ‘you deem appropriate’ everyone else should not donate, who made you judge of what is worthy. EVERY disease, crisis etc is worthy of our attention and efforts, provided we want to give to it, does not matter how big or small it is. In this case it was not size of contribution but volume that made a difference, it is crowd funding at its best and I applaude the people who made this happen for a cause that is ‘dear to them’.
    Go ahead and do the same for your own preffered causes and make a difference, without wasting time with articles like this.
    And to say ALS is not worthy is a unfair and uninformed statement, maybe the number of deaths are less, but a lot of patients spend years suffering first, if you have even known someone who has been through this you would not be so quick to dismiss it.

  40. This comment has been removed

  41. You should ask first, Prime Minister Harper all this questions before ask ALS organization:
    1. Where is the greatest need?
    2. Where will my dollars have the greatest influence?
    3. What is the most urgent problem?
    After that and only after you get the answers whatever they are, you would have the right to question all this people around the world dying, forgotten by you and anyone who agrees with you. You probably have no clue what ALS is!? Please, take the time and see this: http://www.upworthy.com/the-last-ice-bucket-challenge-you-need-to-see-and-you-really-should-see-it?g=3&c=ufb1

  42. Wonder what kind of a diplomat you were? You have no diplomacy in you at all!
    Take a look at this ALS Ice Bucket Challenge – https://www.facebook.com/LeonardoDiCaprio
    I really believe that you should do an apology in the magazine you post that rubbish and at ALS website!

  43. The writer’s entire argument relies on the pretty crucial assumption that the money collected thanks to IBC would have gone to another charitable cause. But he has no evidence to back this up.

    What if a significant share of that money was actually *incremental* to charitable causes, e.g. perhaps it was actually diverted from other forms of consumption such food & entertainment, buying books, etc… or simply savings.

  44. Ya okay so the charities you say are okay lol all of these charities need money period. But yes go on haha

  45. Not really fond of gimmicks, grandstanding, the power of social media, or reality TV, and this has aspects of all the above tied to it. Do thousands of gallons of clean fresh water need to be wasted when so many in the world are without? How many tons of CO2 have been produced making the ice to put in the buckets, or to power the lighting and/or crews and vehicles/facilities to make all the little self serving videos? I’m not an innocent tree hugging individual by any means, but I am aware that we are a society of extreme waste and excess, and try to temper my life to some extent.
    Bottom line, I guess, would be give to the causes you feel are deserving, and please, put some thought into it.

    • And really, all I got out of the article, is to not just jump on the gimmick train when it comes to donating, but really, just put some thought into it.

  46. I don’t even know where to start Mr. Gilmore, other than to say you are an idiot. Should we tell the SPCA that humans are more important than pets so we should stop them from wasting money on animals? Or maybe we should tell the LGBT that starving kids in Africa should get our money before fighting for gay rights? People donate money to those causes that are important to them, and who are you to say what those causes should be?

    This Ice Bucket Challenge is an amazing example of what people can do with Social Media. Since it didn’t even begin with an ALS organization, its pretty hard to peg it as a marketing scheme. I read this article all the way through and I conclude that you are an idiot.

    You also hate on Movember which makes you inconsistent. Movember helps prostate cancer, which over a million new cases are diagnosed each year, hundreds of thousands of men die in that same period. That makes it extremely relevant. Its also on the TOP 100 best Non Profit Organizations. This falls under your guidelines of what we should donate to, yet you mock it? Interesting.

    Maybe MacLean’s Magazine can make a list of approved charities, and how much as a minimum we should start paying them? This would be very helpful.

    • “Should we tell the SPCA that humans are more important than pets”.

      Yes, ideed, we should. True story: while on an international aid mission in a country whose name ends in “-stan”, I met people from an Island that apprently has yet to find out the Sun does indeed now set on her Empire who were trying to raise funds for charities such as feline immunodeficiency virus (HIV for cats!!) and against corporal punishment of the donkeys that pulled cartloads in the street.

      In a country where 80%+ of the population is without running water, and where diseases thathad been eradicated from the face of the Earth (polio) in the last century are making a comeback, the sensible allocation of resources is not to cats and donkeys. Period.

      Go have a look at ALS society financials, how many pennies on your dollar actually go to research, and how much goes to earn the living of people who have turned charity into their lucrative business. Then compare ratios with serious charitable organizations — Doctors without borders comes to mind — who do actual good work in the real world. Then wonder how much good your great little song and dance on YouTube did.

  47. I totally agree with Scott. Someone pointed me to this commentary after I wrote a blog of Why I won’t participate in the Ice Bucket Challenge. My sentiments are similar. A lot of folk seem to concur with your opinion and mine, but they are afraid of going against popular opinion. My blog entry addressing this topic is at http://bit.ly/VNYeUl Again, thanks for making me not feel like an outlier! Patricia

  48. Every charity competes for your money just like every business will. The only thing that can be considered ‘bad’ are the marketing choices put fourth by charities that are falling to appeal to new donors.

    Good reasons to donate:
    1. Need
    2. Influence
    3. Urgency

    GREAT reasons to donate:
    1. Ice Buckets
    2. Wristbands
    3. Mustaches

  49. The fundamental mistake that the author makes is that he is trying to bring ration, logic and a dispassionate analytical view to a topic that is inherently anything but. Other than large corporations who might donate to a charity because of social/cause marketing factors and some shameless self-promotion, the vast majority of individuals, rich or poor, who donate to a charity do so because of some personal tie and/or some gut-level emotional appeal.

    In fact, the VAST majority of charities (it would boggle your mind to know how many registered charities there are in Canada!) are small, family-initiated causes started because of the plight of a loved one. It doesn’t get more personal or more emotional than that….

    In fact, there are over 170,000 charitable and nonprofit organizations in Canada, among which are at least 85,000 registered charities recognized by the Canada Revenue Agency!!

    It is not surprising then, that almost all donors lead with their heart. Many however do not do any sort of research as to what sort of impact their donation is likely to make, and many do not even really research the charity itself. That is why kind-hearted donors often get taken for ride with scams and ‘bad’ charities who do not do what they say they are doing. Therefore, pitting one ‘charitable cause’ against another is pointless in the view of the vast majority of donors, no matter whether the argument is sound or not. It just will not compute, as evidenced by the nature of most of the comments on this thread.

    Now if you were the Minister of Health and had a finite pot of dollars to spend, then you MUST take a more analytical approach and try to do the most good with the dollars you have. In that instance, when finite and limited public dollars are at stake, the kind of analytical ‘cold hard cash’ approach espoused by the author is more appropriate, regardless of how cold and cruel that might be.

    Even then, politicians often make rulings for reasons other than logic and ration. Just look at the hodgepodge funding rules for cancer drugs for example.

    So, on one level the author is certainly right – if you want to do the “most” good you look to where your dollars will make the biggest impact on the greatest number of people. By that notion just think how many people die worldwide every day for lack of clean drinking water while we pour litres of it over our heads to make a point.

    But on the other level, the author is dead wrong to presuppose that any of us will use such analysis when our heart strings have been tugged and wrenched by stories of family , friends or even strangers who are afflicted by a such a relentless, incurable and awful disease.

    And the author is further wrong to assume a zero sum game. There is ample evidence to show that for many, it is not an “either-or”. I am willing to bet that the vast majority of people who have now donated to ALS via the IceBucketChallenge were NEVER donors to ALS before, perhaps never donors to ANYTHING, and even if they were, that this will not overly disrupt their giving patterns to other charities in any case.

  50. First of all who are you to dictate where the public spends it’s money?? Why aren’t you fighting for the public and ask and worry where the government is spending OUR money?? As for cancer research, and money for cancer research…well as much as I know about breast cancer, there are natural cures for cancer that the government won’t let be published because it will stop money coming into the pharmaceutical companies and Drs might be out of business. My mother had breast cancer, had the breast removed, no chemo, no radiation and is cancer free still 10 years later at 77. MS on the other hand is a disease that could use alot more research and what happened there?? When the break through of having the operation to unblock certain veins in the neck….someone put a stop to that. WHY????? My sister in law had to be put on a waiting list to have the operation done in the US. There was and are breakthroughs in these diseases and it seems when there is progress it is somehow stopped by government red tape. Whether 10 people are dying from it or 10 000 people are dying from a disease…..every person’s life deserves a chance. Stop playing God just because you think you are up on a pedestal an actually talk to people that have lost family members to ALS or who are going through it.

  51. For those of you scoffing at the “limited resources” idea, there is research to back it up: http://qz.com/249649/the-cold-hard-truth-about-the-ice-bucket-challenge/

    For those of you who think the author is a heartless bastard, try re-reading the article. He doesn’t say that ALS is not a terrible disease. He doesn’t say it isn’t heartbreaking. He doesn’t say it shouldn’t be funded or cured. He points out that it *is* well funded, that it affects relatively few people and, if the only reason you’re donating is because you think ice buckets are fun, you should stop and consider how to make the biggest impact with your money.

    We are supposed to have these kinds of discussions, even about difficult issues. *Especially* about difficult issues. The author may be wrong. Perhaps a $70 million dollar cash injection with cure ALS once and for all. Maybe boom-bust research funding will be the new model. But attacking his character is a childish response.

  52. There are so many things wrong with this article that it is hard to know were to start. Yes ALS receives more $/fatality in private donations than Heart Disease. Heart Disease receives billions in government research dollars as well as far more in private research investments. A treatment for heart disease has much more potential to make a company that invests in research money, so diseases such as hart disease get the larger share of private investment.

    Research into diseases such as ALS are far more likely to be dependent on private donations simply because they aren’t among the top priorities of big organizations dividing up massive budgets.

    And while people do have finite amounts of money to donate to charitable causes, the amount the choose to donate is not fixed. Individual charitable donations aren’t determined like some government agency dividing up a fixed budget. Most donations to things like the ALS ice bucket challenge aren’t coming for a fixed charitable contribution budget. They are made mostly on impulse, and if you feel the need to categorize them in some budget column, entertainment is probably just as valid as charitable donation. The money comes from people’s disposable income, and a donation to the ALS ice bucket challenge likely has very little bearing on how much they might donate to other causes.

    The logic behind this article is simply unsound. However the premise that the author has the right to tell people that there isn’t an urgent need to research treatments for a life threatening illness is absurd and offensive.

    The mere premise that he has any right to tell people what charities are worthy is offensive.

    People already pay huge amounts in taxes that get budgeted by the government to address public health concerns. Their individual private donations are a relatively small portion of funding for medical research, and they have every right to direct that money in any way they choose.

  53. So because ALS doesn’t kill that many people a year it is not in need of research? I have NF Type 1. In general NF alone doesn’t kill but it can cause all kinds of shit. Cancer, tumors, bone problems. It is more prominent than Duchanes MD, Huntington’s disease and Cystic Fibrosis combined, affect 1 in 2500 people. Funding is always needed for it. But by your reasoning it doesn’t really deserve huge funding? No disease or disorder deserves less funding than another!

  54. This may have been said in the comments before, but when it comes to heart disease I really think research is already overfunded. News flash: cut down on fat & cholesterol, get some exercise. I don’t think millions more in donations is going to mean “finding a cure.”

  55. In Scot Gilmore’s opinion piece on the ALS Ice Bucket Challenge (MacLean’s Aug 24, 2014) he dismisses people with ALS as expendable, sad stories, and not worthy of attention or spending resources on to find a cure. I find his view to be extremely offensive, narrow minded and naïve and I am equally perplexed at why MacLean’s Magazine would provide Gilmore with the pulpit to spread such counterproductive ideas.

    He begins his dissertation by mocking other successful campaigns to bring awareness and attention to other causes such as Movember for prostate cancer. By the same token I guess Terry Fox’s Marathon of Hope, or Cancer’s Run for the Cure or even Jerry Lewis’s Muscular Dystrophy Telethon can be dismissed as tomfoolery aimed at cleverly beguiling people with bright shiny objects while pilfering their pockets when they were dazed.

    Gilmore thinks that we need to do some simple math and put all our charity dollars into the big illnesses like cancer or heart disease, that somehow we should only focus on the popular illnesses and give all others the cold shoulder. People with ALS (like me) should just get on with it and suffer in silence for the better good of society. ALS, according to Gilmore, depletes from the resources that should be used to cure an illness that he and others stand a better chance to get like cancer or heart disease. Or Ebola, apparently.

    FACT: The world has the capacity to do more good. There is no limit to the amount of good that people can do, or that this world can provide, only those limits we impose on ourselves. Perhaps Gilmore spends more time considering his pizza order than he does for choosing a charity, but the reality is Canadians are not nonchalantly tossing quarters into the hats of homeless charities on the street corner as they head out to buy their afternoon latte. People consciously choose their charities, and many do because they know or knew someone with that illness. They will continue to support those “popular” charities, that bond will not vanish. Gilmore states that ALS “is already extremely well-funded.” I was stunned to read this claim. Stunned! As a rare disease this illness has historically been underfunded and neglected and as a result little progress has been made toward finding a treatment or cure. He then uses a simplistic mathematical approach to validate this absurd claim and juxtapose the number of people who die by number of dollars raised by other charities for cancer etc.

    Gilmore’s assertion that cancer and heart disease is underfunded by comparison of ALS is ludicrous and mean spirited. Those charities have millions and millions of dollars and are very well funded and the level of awareness for those illnesses is well entrenched in our everyday lives. Gilmore also misleads readers by stating that ALS has raised over $70 million from the Ice Bucket Challenge. The readership / audience is Canadian, ALS Canada has raised only $7 million; to be clear that other number is for ALS in the USA, not the ALS organization in Canada. Cancer and heart disease has a massive pool of funds from which to conduct their research in labs and with thousands of specialists that have been in place for decades. To suggest the state of ALS research is more advanced or is more secure than that of cancer is grotesquely obscene!

    Gilmore’s way of thinking is both reckless, heartless and wrong. In the 75 years since Lou Gehrig announced he had ALS very little progress has been made in finding a treatment or cure. When I was diagnosed with ALS last year I found that very few people knew what ALS was, the Ice Bucket Challenge is changing all that. The media is talking about it, the public is talking about it. And for every person or “slacktivist” doing the bucket challenge, multitudes more are learning about ALS through this public discourse for the first time and backing up their actions with time and money. That’s significant. You can’t begin to solve a problem if you don’t know that it exists. ALS is arguably the biggest of the rare diseases in the rare disease spectrum. As a rare disease ALS has been told to get to the back of the line for many years by people with Gilmore’s mindset.

    As many people are diagnosed with MS as there are for ALS but yet most people are familiar with what MS is. Our problem is that people with ALS typically die within 5 years so there are fewer alive to fight the cause, and MS has a course of treatment that can extend the life expectancy unlike ALS. Approximately 3,000 people at any given time have ALS in Canada. Every day 2-3 people get diagnosed and every day 2-3 people die for it. Gilmore says “thankfully, only about 600 people die from it every year in Canada” The actual number is closer to 900. Gilmore claims that ALS research is not an urgent. Again this way of viewing the issue is one of the reasons over the last 75 years that we have been told to get to the back of the line and is why the problem has still not been solved and why people continue to die. Advances in research have addressed AIDS, heart disease and cancer to the point now where many lives are now saved as opposed to condemned. ALS is a death sentence. There is no cure and there is no treatment.

    Gilmore states that ALS research is not an especially great need in public health. The World Health Organization has stated that neurodegenerative diseases, including ALS, will surpass cancer as the second leading cause of death in Canada by 2040. The burden of cost for ALS care is greater than any other disease state. Canadian families affected by ALS face over $150,000 in direct and indirect costs. Families shoulder 80% of the responsibility of direct care in addition to significant economic depletion. ALS is nick named the bankruptcy disease because 40% of families with ALS will face bankruptcy. If you take all the people who have died in Canada and the US over the last 75 years since Lou Gehrig gave his famous speech you could fill Yankee Stadium 46 times with people who have died from ALS. This won’t be cured overnight. If this isn’t an urgent public health concern I don’t know what is.
    Since being diagnosed with ALS last year I’ve met with politicians to lobby on behalf of ALS families for increases to federal supports. The ALS community is asking for increases from 6 to 35 weeks for compassionate care benefits so spouses can take time off to provide 24/7 care for their terminally ill family member during their last few months of life but Minister Jason Kenney won’t budge and says 6 weeks is all you get from him, so we better get it done and die within 6 weeks or you’re out of luck my friend. ALS Canada has also been asking Health Minister Rona Ambrose for a dollar for dollar donor matching program (up to) $1.5 million a year to support stable source of research funding. It’s nice to see that Ambrose has done the ALS Ice Bucket Challenge but will she stand behind her public display of affection and grant ALS Canada the dollar for dollar donor match that the ALS community has been asking for? We haven’t been asking for much but you would think we were asking for the world. Many politicians didn’t know anything about ALS, so how can you expect ALS to get any attention? The Ice Bucket Challenge changes that. I don’t have much longer to live so I can’t stick around to fight this fight according to their time table, the need to change is now. Changes to these supports help no one after they die, so every day wasted has an impact on vulnerable Canadians.

    So now after decades of trying to raise awareness and put the focus on ALS and the search for a cure we finally get some desperately sought attention front and center in the media by the Ice Bucket Challenge and Scot Gilmore wants to deny us that moment and callously dismiss everyone’s efforts to do something good and worthy. In a condescending tone he tells us to fold up a piece a paper with three points and put it next to our credit card and think twice before wasting our money donating to such an unworthy cause as ALS. Unbelievable.

    I’d like Scott Gilmore to come to my house and look my wife and children in their eyes and tell them that supporting the quest for a cure is unworthy. I’ll invite my brother and sister-in-law and my nieces and nephews and my parents and siblings and my friends to come and you can tell them that too.

    What kind of person sees someone help a vulnerable Canadian, and then mocks that person and threatens to push the vulnerable Canadian down again? I don’t see the value in doing that. Is the world a better place for having that mean spirit? No, it’s not.

    Unlike Gilmore, I prefer to look at a problem and see value in trying to solve it. Mr. Gilmore, your opinions on this subject are misguided, lack a depth of understanding and are insensitive. You should stick to writing about what you know. You owe a lot of people an apology. I’m disappointed that MacLean’s would publish such rubbish.

    Brian Parsons
    Ottawa, On

  56. Worst.Article.Ever. But your are getting some significant attention .. maybe even viral. Oh whats that .. viral is ok when it benefits you? Shocker.

    You are PO’d because ALS has raised TOO much money? I didn’t know there was even such a thing.

    Get over yourself.

    Do you think the ALS organization ever for a moment thought it would get THIS big? Yeah the guy that started it and barely has functioning muscles said to himself – I bet you this is gonna make 70 million bucks and I will be a hero. Right.

    It’s viral because it is simple, actionable and PEOPLE are backing it – the same people that technically pay your salary in one form another – you big ding dong. Why are you being all judgey over something that has ZERO to do with you? ZERO.

    There are people that have donated that probably have NEVER donated to ANY cause… and now they have. They have gotten a little taste of it and perhaps that will spark them to want to give a little more in the future to wherever they want to donate. But let me guess… they must be making a financially irresponsible decision based on your stats and charts.

    In a world full of tragedy, the human spirit is uniting and you take ISSUE with that because it is not in YOUR top ten list of who YOU think WOULD deserve it? Are you going thru a bad break up or something? You can’t be in the right state of mind.

    If the Heart and Stroke came up with a viral campaign to blow a kiss and donate – you would find SOME reason why it was too much, not run well blah blah blah. Unless of course it was your idea and then you would be a genius.

    ALS has no idea what they will be doing with all of this money yet. How can they? Do you know what a HUGE undertaking that will be? It would be like you winning the lottery and all your relatives asked for a piece of it… except your relatives are millions of people – some that are dying as they breathe from this horrible disease…. although according to you – not enough of them for us to really care about.

    ALS will need to set up grant/funding programs which means people will need to read and assess every proposal. They will need to find a way to have that 70 +++ Million make them more millions and be sustainable. The work in front of them is going to be amazing but it is not going to be easy. They are going to be scrutinized and accountable to the millionth degree and you can’t even let them blow out the candles on their cake before you throw it in their face. Really?

    And guess what .. NO ONE is forcing ANYONE to do it. Challenges are not death sentences if you don’t do it. Get nominated and you don’t want to — NO PROBLEM – don’t do it. But do you know what is a death sentence? ALS.

    I hope karma doesn’t bite ya and you or anyone in your family needs to rely on ALS as organization … now wouldn’t that just be a kick in the pants?

    PS: I nominate you to take the ice bucket challenge… I think you could use some cooling off.

  57. We took it up a notch in our area and did a CHARITY GAUNTLET – focusing more on charitable acts than one donation. We did 10 challenges for 10 charities and $10 for each – with the last being ALS. The urge to be charitable is fine – but this rising tide should lift all boats and not just one. I applaud the author for trying to bring some perspective to well intentioned wagon riding.


  58. I can’t believe this article !! It is a great cause. If the cancer society would get rid of the majority of its administration and have the money go to where it should to research and the patients than they may also have successful campaigns !!

  59. No no. Completely disagree! Strongly, actually. People should donate to whatever cause they see fit. Whether that be for personal reasons, logical reasons perhaps based on need or even it was at the right place at the right time. Donating reasons are rarely ‘bad’; unless you donate to terrorists or something.

    I believe that many of these individuals would never have even thought of donating had it not been for this silly challenge. Same with Movember.

    I lost both of my parents to cancer and my gramma was affected also….I personally think giving much more money to curing cancer is a mistake! Why don’t we try to prevent it?? Billions of dollars has been donated to cancer research with little outcome when speaking of those who die from it. I think it is disgraceful!!! Most people know how to prevent many types of cancer, yet it still kills people. Absurd!

    If all you rely on for a decision is logic, you would be paralyzed in making your decision. Likely leading the individual NOT to donate. How does one compare cystic fibrosis and huntingtons?

    It’s disgraceful to knock an organization for raising money for its cause. By the way, ALS as an organization did not start this ice bucket challenge so there is no ‘marketing gimmick’. A poor soul who has ALS started it on his own just for fun and to raise awareness. We, as a society, have made it what it is: a ‘look at me’ campaign with most people barely even mentioning what it’s for!!! We are to blame!

    I for one, am about to vomit if I see another pink ribbon anything!!!!! Don’t get me wrong, I am sorry some people have cancer (especially children), but I do really believe that prevention is key. And there seems to be a hole in that bucket where all the donated dollars just fall right through.

    All diseases are horrible and not just for the person who gets them. Donating any of anybody’s hard earned cash to ANY cause is commendable. We should appreciate every penny!

    ….I think I will donate to baby seahorses now and see who wants to tear that donation down…..

    What if all this actually leads to a cure? Then all future donated dollars can go to another worthy cause:)

  60. Wow, I can’t believe I read that article in the MacLean. The guy who started that challenge was not a marketing specialist and his goal before he dies was to leave something that would raise money and increase public awareness. It was not about charity or about using metrics to determine which cause would deserve more money. He was dying from a horrible disease that has no cure at all! We donate to charity because it touches us, and it is normal that even though we can be touched by tens of thousands people dying in other countries, we will be strongly touched by diseases that kills and killed people around us.

    It is amazing that a single guy with no financial resources could reach his goal with that much success and it is a shame to bash it. If it doesn’t touch you, don’t do the challenge, give your money elsewhere but don’t write such an article in the MacLean. Yes it doesn’t affect that many people, but these people may one day be your mom, your son, your husband or your best friend. And I wouldn’t want my worst enemy to die from that disease that kills you soooo slowly.. until you can even not breath and your heart becomes unable to keep beating.

    My dear Scott, the day you or one of your loved one will be diagnosed, you will change your mind and consider it urgent and suddenly see the need.
    You say that each dollar could be more valuable if spent somewhere else but I will tell you something: 80%+++ of the donation made through this challenge wouldn’t have been done at all, so other causes wouldn’t have benefit from those dollars anyway.

    Learn more about Pete Frates that initiated that movement:
    RESPECT, Pete Frates!

  61. Ive read a ton of articles on ALS now, watched a ton on it. Its a two sided argument, and I see merit on both. What the article you posted makes a lot of sense, and so does the fact that.. should these people be ignored and not helped because there is less of them? Does that make them any less valuable as humans? How must that feel to them? Im not for one side or the other. But, I see the reason on both sides.
    I think its a personal choice. Everyone has the right to donate to whatever cause they believe in, whether it is the greatest, most urgent, etc or not. I donate to a small school in the Philippines. Thats not the most urgent or biggest reach. And, I dont give a fuck. I care about them, I have a connection to them. I would rather donate to help those kids, which will have no effect on my life, then to an illness Im ‘more likely’ to get. Because, I care about them more than what I ‘might get’ right now. Their life to me, is more valuable than mine if I get ill, because their kids, and deserve a chance at an education. Its personal choice. To me the true issue with the challenge, is that people dont educate themselves on it and make an informed decision about their contribution or choice not to. But, that isnt the challenges fault, thats a lazy ass people problem lol.
    In the end, its a bit like the Kony phenomenon. It isnt perfect, it has a lot of shortcomings. But, I could bitch about it, or recognize its positive aspects along with its shortcomings. Its getting people involved in philanthropy and thinking about things. Both the + and – articles are generating intelligent (mostly lol) discussion and analysis on the human condition, social media, and motivation. And that is needed. And, it truly means a lot to many people with ALS. So, its happened, the challenge went big. It has its issues, lets hash them out. But, in the end the motivation behind its inception was positive, lets not tear that up completely. We need more positivity in the world. More reason to make someone smile, and if this does it for a person with ALS, or for my friends 6 year old daughter because she believes shes doing something that helps somebody, and if it makes some people stop and think/analyze about things beyond their new iphone, then despite its failings, I choose to focus on those positives.

  62. Great article and well thought out.
    The responses here really are amazing, yet not unexpected, and completely missed the point.
    Maybe you should have included a lesson on fallacies as well?

      • I’m surprised the first response wasn’t someone who jumped down my throat .. haha.
        I’m not familiar with him but the basis of the article is sound, if the facts are right.

  63. You’re missing the point. It’s a great idea, use this as inspiration to create a marketing thought for ’causes’ that matter to you…not slag this idea and its ’cause’ because you have deemed it not worthy.

  64. I’m sorry that the author does not think the 600 people who will die this year in Canada, and the 3000 currently living with ALS are not worth it. Yes, there are many other terrible diseases out there, in larger numbers, but ALS is on the rise and actually not preventable by lifestyle changes as are the big 3 killers. As one of the 3000 in Canada, I am happy for this moment in the spotlight and grateful for any contributions because a breakthrough may just save my life.

    • I couldn’t agree more! Scott Gilmore, how much nonsense can you come up with?

  65. This is why the MACLEAN’s bad for you, and me, and all of us. Instead of going out there and supporting what is most needed, we read this rubbish. ALS is relentless and deadly. ALS research has been under-financed for decades. In part, because there are no survivors that could raise any money. Btw, do your research, the ALS Association is a US American organization. In Canada (that country with the maple leaf that you find in MACLEAN’s), we have not even reached the $10 million mark. Compared to other charities (cancer, heart disease, stroke….) these $10 million are still a joke. Anyways, I will continue with the ice bucket challenge. I have spend enough time on this website. Fools!

  66. I must admit the author does have a point. ALS probably is not the most worthy charity.

    Significant portions of the world do not have access to safe drinking water and many die every year from diseases related to water borne illness. I wonder how many lives could have been saved if all the litres of clean water that have been dumped on participants heads had been instead given to those without clean water.

    However, do we chastise the clever for using their cleverness towards a ostensibly humanitarian goal? Probably we shouldn’t, nor should we chastise those that participate, for whatever motives, so long as their motives are more or less “good.”

    Should we make better “good” decisions? Probably. Should we lose sleep because even at our best we could be better? No.

  67. I’m curious to know how much this article raised for any of the causes listed above. It’s one thing to complain that someone had a better idea than someone else, but it’s conpletely different to go out and do something about it. Saying that there are less peope affected by this cause than others is completely irrelevant. To someone suffering from ALS, this cause is a priority. If you want to see more money raised for other causes you deem more important, then get off your high horse amd do something about it – other than shaming other fubdraisers that worked!

    • The author founded a charity that’s created over 100,000 jobs for people living in some of the poorest places on earth. I think he’s got the “do something about it” covered. The question is whether dumping a bucket of ice on your head and donating some money to ALS counts as “doing something about it”. It very well might – it certainly does for ALS, and that’s great for those who are affected. But there’s also research to suggest that when people give to one cause they don’t give, or give less, to another http://qz.com/249649/the-cold-hard-truth-about-the-ice-bucket-challenge/ (It’s an interesting article, Ice Bucket Challenge aside). There’s nothing inherently wrong with that, but I think the author’s point is that people are making the decision based on celebrity videos rather than thinking about where help is needed. It’s sort of like a charity lottery – great for the winner, but not a very good way to fund charities.

  68. Well I think we can see why you are a former diplomat. What a positively crappy article. If you don’t like the bucket challenge fine but to slag it and rain on the hope that it has given the sufferers of this evils disease and their family and friends and anyone that has ever had to watch someone they love wither to pieces in front of them is just plain nasty. It indeed is not ‘urgent’ like Ebola currently is but there is always going to be something urgent waiting in the wings. It doesn’t mean we stop working on everything else. ALS is currently incurable. It ravages ones body leaving people afflicted with it unable to to walk, toilet themselves, feed themselves (tube fed), speak, have any muscle control and completely dependent, choking on their own saliva. I work in the funeral industry and spend a lot of time helping families and visiting them in hospitals, care homes and hospices and I meet people suffering from all sorts of people at the end of their life under all sorts of circumstances and I wouldn’t wish ALS on my worst enemy. And honestly, if you do the challenge it’s $10 skip your afternoon Starbucks run. Unbelievable. You probably steal toys from babies and hate puppies.

  69. That creep needs to learn the facts. The more we tell people about this disease, about how it spreads through your body leaving you helpless, the more people know, the better the chances we will have at raising funds, advocating for improved assistance from the Canadian government, and finding a cure.

  70. Your article is disgusting sour grapes. How many years have all of the other health causes been receiving donations and had the opportunity to do research? Beyond being bad taste you are creating negative feelings to those families who will benefit from the research to cure and prevent this devastating disease. My mother died of Multiple Sclerosis when I was 12. Am I angry that ALS is getting all of this money. No. You should be ashamed of yourself and I hope you never get a disease that has no cure because you then may understand the generosity of the public that will produce research for ALS that may result in findings that will help other similiar or related conditions. Shame on you. You should be fired from journalism. Your article has done nothing to generate goodness, only jealousy and resentment of those whose campaign was producing such a joyful process of donation to a disease that kills everyone who gets it, and destroys the families that live through the horrific death it brings. Fuck you very much.

  71. I find it morally repulsive to suggest that just because not many people suffer from a disease, it’s somehow not worth contributing to. “Sorry mate, you’re going to have to wait till a couple thousand more people get sick before we give a fuck.”

    I dare you to sit down with someone actually suffering from advanced ALS, look them in the eye, and argue your case.

  72. I can usually respect the opinions of others but this writer is out to lunch. Maybe he should talk to my grandmother who lost her husband to the disease in 1983 and tell her that ALS is not a deserving cause for our money. While I will not be dumping a bucket of water over my head I did donate money to the cause and think that this challenge brought more attention to this terrible disease than anything else ever could. What an irresponsible article by this author. He should be 100% ashamed of himself for writing this.

  73. I am all for a good discussion, but in this case it missed the mark. The comments by the Philosopher are just name calling. Because we have a different opinion than him we are “morons” “immoral” “dumb” and “not clear-headed” to name a few. I for one am not prepared to spend my money saving Africans. I will always look at my own country first and in turn my friends and family. It’s not for him to say we don’t get it. I do …. but you know the Ice Bucket Challenge has brought many people together for the good of the cause. What harm is there in in that? Why does Mr. Scott Gilmore have to be such a wet blanket. Most of us are not stupid people – I look at it as a “random” act of kindness and if it goes viral – so much the better. No one is saying cancer, heart disease and AIDS is not important – I have contributed to all of these causes. No one is disputing the numbers. What a wonderful sense of togetherness – people coming together for a good cause – how is that bad? Having fun doing it – how is that bad? Each of us can decide to participate or not. I have seen many young people get involved – much better than the drinking challenge I say. So please, allow individuals to make a choice – if it’s a choice of the heart, that’s great. There is nothing wrong with that. I am a Canadian and free to make my choices. Don’t judge me.

  74. As someone who lost her father to this horrible disease a few months ago, I take exception to this article. On a personal level, I find it hurtful that someone would question the value of putting resources towards something that profoundly affected my family. My father suffered a devastating, humiliating and hopeless 2 years before he passed. I’m not saying that people with ALS cannot lead meaningful lives, but there is no reprieve and currently no hope. No one survives. There is no treatment whatsoever. To me, that’s what needs to change. Awareness, which leads to money, regardless of how it is gained, is what is needed to fund research.
    Regarding comments about the percentage that goes to things other than research: yes, the ALS society provides much needed equipment such as wheelchairs, communication devices, beds, etc. These items are not cheap. Perhaps a higher percentage can go to research now that there is more money in the pot.
    As for other worthy causes, I agree that there are lots of them, but let those of us for whom this cause is near and dear to our hearts enjoy this moment. It will pass but in the meantime we can take comfort knowing that people are more aware and perhaps as a result others will not have to suffer as my father did.
    Regarding ‘good reasons to donate’: this is subjective. I believe ALS easily meets all three. And I think your numbers are a bit off.
    Regarding ‘bad reasons to donate’: there are no bad reasons. If people are moved by a friend growing a moustache, wearing a wristband or dumping ice water on their head, who cares? The point is they were moved.

  75. ALS is one of Many MND’s, but this guys does not know that because he is lazy. ALS in the US is used as a blanket term for all MND’s, because people apparently don’t do research, so they wanted to make it easier for people. All the stats this guy mentions are distorted so badly, that this is one of the worst pieces of information ever from Macleans. Don’t ever pay this “journalist” a penny ever again.

    I really wish this guy did some research. Lazy journalism, or journalism that just gets made to get this really bad journalist some shares on Facebook.

  76. This article makes me sick. How dare you decide who gets to live or die!!! What gives you this God complex I wonder. ALS has done an amazing job this year and I hope other charities will follow suit and get the masses involved. You say we should send our money over sea’s while our own population has problems such as sickness, poverty and homelessness. Mr Gilmore if you’re are so concerned about what’s happening everywhere else in the world maybe you should move to one of these places, boots on the ground, to fight these other causes you are so concerned about. Or you could just do the rest of us a favor and keep your ridiculous opinions to yourself.

  77. I don’t agree with this. Sure there is always going to be a “better” charity” to donate for when you use statistics. Tell that to all the families who lost someone from ALS. Can you imagine that conversation…. “Sorry statistically speaking ALS is not the most logical charity to donate to”. Progress in the research would be a beter comparism. If we are on the subject of statistics it fails to mention 20% of heart disease deaths are directly related to smoking, a choice one makes before getting heart disease. 70 percent of Heart disease deaths are directly related to Obesity(not in all cases but in most this is another choice). Now I am not saying to stop donating to Heart disease charities, I just see holes in this article

  78. To everyone who disagrees with Scot Gilmore please write a letter to the editor, letters@macleans.ca . I normally have a great deal of respect for Maclean’s magazine, but sometimes garbage gets through.

  79. Some good points here.

    Lets expand on your idea further.
    1. The government should not allow individual charities and everyone donates to the same pool.
    2. We should pool all resources to combat one disease at the same time.
    3. We’ll let the formula you’ve decreed above decide where to start.
    4. I know people who have done it would not have donated elsewhere, so that’s not very fair. Lets get the government to take 10% of everyone salaries each year to add into this money pool.

    There you go, everyone wins. Well, except for everyone who has a disease that’s not currently in the process of being helped. But hey, at least we are making the biggest difference.

  80. I am disgusted by this article and am furious that Maclean’s would allow this article to run!! I lost two sisters who were under the age of 30 to ALS, along with my Uncle. ALS has NO CURE and is a death sentence to all this diagnosed. I had to witness my sisters go from happy healthy people with their life agead of them and within months become paralyzed unable to do anything for themselves. They both died within a year of diagnosis, given no hope and no fighting chance to survive. All they could do was wait until death. ALS is an extremely important cause and before this ice bucket challenge did not get the attention it deserves. How dare this writer say such insensitive comments. ALS and strike anyone at anytime, no matter how healthy you are. I wonder if he would say the same thing if he was personally affected by this terminal illness. Maclean’s shame on you for allowing this article and as a result I will no longer subscribe to this magazine and will spread the word to my family and friends.

  81. Why would you write a propaganda piece discouraging those who may not donate to any charity from donating to a lifesaving cause? Asshole move, I hope you catch a rare disease and someone tells you that saving your life isn’t urgent.

  82. There many things about this article that have outraged me.

    Who are you to tell us what charities are worthy of our money?
    Who are you to define what are good/bad reasons to donate –
    and moreover, that last point being the author’s focal point,
    how REDUNDANT can you get?

    Nothing bothers me more than a person who is both smug and stupid.

  83. why is “number of deaths” the bench mark for impact of diseases? it seems there are a number of important measures to be considered.

    what %age of the raised money would actually have been donated to other charities? or where would we spending the money if we didn’t donate? I doubt the dilution to other charities is 1 to 1. ie this campaign generated CHARITY, and also redirected existing $$$ to the ALS campaign.

    what is the value of raising a large amount of money and then focusing a lot of intensity and resources on finding a cure? I mean is this a better way to find a cure? or is it more inefficient? Do we know?

    does the campaign inspire people to be come connected to charities that matter to them? and in turn become more charitable in general, contributing more in terms of time, attention, energy and $$$s?

  84. Why the ALS bucket challenge is good (for you and a lot of other people, and the world in general)

    Scott Gilmore states we should consider 3 factors when deciding to whom we should donate:
    1. Where is the greatest need?
    2. Where will my dollars have the greatest influence?
    3. What is the most urgent problem?

    In response:
    1. “Need” – how is this defined? Gilmore states that ALS is “not a great need in public health” – true it doesn’t kill as many people as cardiovascular disease or cancer. But sufferers develop progressive muscle weakness to the point where they are unable to breathe for themselves, feed themselves or move. A number of them develop dementia. It is a horrible, horrible disease. Is need really measured in numbers affected, or severity of symptoms? My answer is – I don’t know. But I can see the need in promoting awareness and research into ALS.

    2. ALS is a neurodegenerative disorder. If we’re to get stuck into the scientific details, it isn’t really the same as Parkinson’s or Alzheimer’s, but broadly speaking, they’re similar diseases. Research into ALS encompasses stem cells, immunology, genetics..any breakthrough in ALS might well be a breakthrough in some other field or disease. Alexander Fleming was not researching antibiotics when he discovered penicillin. So if we’re talking about greatest influence, the potential here is enormous.

    3. What defines urgency? there are multiple causes in the world, each varying in their nature. Some are about violence, some are diseases, some are natural disasters. Some are acute, some are long standing. Gilmore lists Ebola, Syria and Central Africa.
    Well why not Gaza? Why not PETA? Why not FGM? It is ridiculous and futile to argue over which charity is more worthy.

    Why not celebrate the power of he internet and social media? Why not extrapolate lessons from this for future causes? Why not take heart from the fact that many people will benefit?
    Gilmore assumes that many of those people who’ve taken part in the ice bucket challenge ignore all the other charities. It’s not true – I myself donate on a monthly basis to two charities (WWF and NSPCC). Many of my friends who have taken part have also run marathons, climbed mountains, cycled miles for other charities. People do have the capacity to support more than one cause at a time!!

    The challenge says a lot about how our society functions; some it is good, some not so. It absolutely appeals to the narcissistic side of the social media user. I’m not going to pretend that I didn’t enjoy filming it, it was fun.I will admit that a large motivation to do it was the chance to get on camera and be a bit silly. Having said that, I wouldn’t have done it if it wasn’t a for a good cause – I wouldn’t have tipped a bucket of water over my head just to have a laugh, and for no other reason.
    Yes, we’ve all jumped on the bandwagon – so what? There are worse bandwagons to be on.

    Our generation is frequently castigated for spending too much time on social media, too much time on our smart phones; it’s wiped out our ability to have a conversation, shortened our attention span – well look, here we have found a way to use it to connect people and spread a positive message. The same can be done for other charities and causes. Also I think this is a better use of Facebook than uploading pictures of my dinner, or telling everyone what farm animal I would be, if I was in fact a farm animal and not a human being.

    We’ll never eradicate all of the planet’s problems, new crises will appear on a daily basis. But together if all do just a bit, we can bring the world closer together and make it better. The Ice bucket challenge for ALS is a great example of that.

  85. I normally don’t respond to these types of articles because they prey on a viral campaign and spin a message designed to create controversy to bolster a “journalist’s” profile. That being said, I had to add my voice to, what is currently the 18 pages of negative responses to your article. I remember a similar conversation around the AIDS epidemic in the late 90’s that this was a disease that only affected a minority of people. Once it gained popular acceptance thanks to Hollywood on-boarding, donations sky-rocketed and sure enough, research funded HIV drug regimens that meant prolonged live expectancy. I will admit that I donated to ALS before the #IceBucketChallenge came about because I have a friend who was diagnosed with this horrible disease a year ago but I donated again, and my family did the challenge because it all goes to awareness. It’s the same reason I donate money to the Cancer Society, the MS Society, AIDS research, RedditGifts and other charities. It matters to me so don’t tell me what I should be doing with my money.

  86. This post is definitely one that comes from an ill mind. The point of charity is exactly that – to give in the spirit of giving. And that’s the thing about charity, because we are all different, we all called to give in different ways to different things. I’m sorry, but I am NOT sending my money overseas to take care of people whose own government should be highly invested in taking care of them themselves. That is not where MY heart lies. I chose the ALS foundation because I have a family member that died from it in a horrible way. But to write an article thinking that you can tell people where to put their money….it’s like telling everyone they can only eat at a specified restaurant for the rest of their lives. I have RA, so my money goes to all the RA foundations trying to find a cure. Don’t you dare tell me that my life isn’t important or worth saving, or not worth a cure. And don’t you dare tell anyone else dying from a disease that their lives aren’t important. Just because they don’t die fast enough, or publicly enough for your ‘liking’, so that the ‘need’ is greater. Give me a break. Writer – get over yourself.

  87. Here, two worthy causes, no waiting…


    You, Mr Gilmore, are a killjoy and a cynic. Some of the diseases you consider more “worthy” of funding would be greatly reduced if people lived healthier, cleaner lives. Last time I checked, you can’t eat/smoke your way to ALS. The only way to prevent it, and I’m no expert, is to not have children. End the bloodline.

    Wait. Is that eugenics? Sorry, I get carried away.

    • The only correct fact in this arrival is that this man is a FORMER DIPLOMAT!! I don’t know how he ever obtained the stays of diplomat but he is definitely not immune from public judgment of his offensive manner. Maybe we should only fund a disease called ignorance. Unfortunately we cannot legislate kindness. It is ALS’s turn to find answers that will end ALS. however there will never be an end to inhuman thinking that weighs human pain as though it is tangible. His campaign of pain is turning against him, much like auto immune disease. There is no pill that will end cruel and unusual thinking. I’ll bet this guy wishes he shut his mouth and maybe now he will. Mr. Gilmore there is no toilet paper strong enough to wipe the bullshit that spews from your asshole of a mind. Forgive him ALS Families, for he knows not what he says. Thank God ALS research finally has a chance to end the torture that is ALS. Forgive me for the cursing but this man deserves it. He is not just giving his opinion like those of us here responding to him. He is spreading a virus called my disease is bigger than your, disgusting.

  88. I have a rare heart disease and because of lack of funding and awareness there is no cure for my disease and chances are I am still going to go through hell and will die young. BUT I agree with Gilmore. I believe for so much money to be raised just to save little old me and the few other people, that have my disease is actually quite selfish. I live in Africa and I see children starving and suffering daily, from starvation and HIV and there is absolutely nothing they can do about it but there is something we can do about it but yet we choose not to. Instead we choose to help out closer to home because it’s family and friends and that’s all that matters. Well, then, shame on you. Are all of you so heartless that you don’t give a second thought for the millions of other people you share the planet with? I have been quite sickened going through the comments section seeing how Gilmore has been berated for his sound ethics and morals and for looking at the bigger picture. Helping millions of people over a handful, that is what it comes down to at the end of the day. And I will never understand how we as humans can allow children to suffer.

    • Actually, his argument is based on flawed economic and medical reasoning. He failed to recognize that money donated for research is not the same as money spent on research. There was no indication that he understood the marginal utility of each additional research dollar either.

  89. Scott, the NIH is funding heart research to the total of about 1.67 Billion a year not including billions more from big pharma. ALS receives only 40 million. A more rational argument would be not to donate to the big diseases like heart disease and cancer because public investment and private for pharmaceutical investment dwarf any marginal effect of private donations. Whereas, orphan diseases are principle funded by donations.

  90. I agree with the author. Sorry.

  91. There are now 20 pages of comments, so I suspect some of my arguments may have been pointed out already, but in case they haven’t, there are a number of serious problems with this gentleman’s argument. The first is the fallacy that somehow the $23 million raised for ALS research is worth more than the $54 million raised for research into heart disease, because fewer people die of ALS. Sorry, but $54 million is always more than $23 million, and that extra $31 million may go a long way toward helping the many people suffering from heart disease. Further to that, the fact that so few people suffer from ALS is exactly why they rely so heavily on public donations. Pharmaceutical companies are hard pressed to justify sinking the many, many millions of dollars required to develop a treatment for ALS when there are relatively few people afflicted with the disease. They simply can’t guarantee a return on their investment. The burden of kick-starting that research then falls to the academic world that survives off of research grants funded by public donations. Thus, if we don’t donate to ALS research (or any other disease that doesn’t fall in his top 10) ourselves we are essentially telling anyone afflicted with the disease that they will never see a cure. I certainly hope this is not what the author of this piece really meant to suggest.

  92. I can’t believe how ridiculous this article is. Who are we to decide who’s life is worth more? Just because ALS is a rare disease it shouldn’t be funded? And let those ‘only 600’ people die because of that?
    Viruses like Ebola are already being funded by the government! It’s out there. People are already aware about it unlike ALS.
    I agree Ice bucket challenge is a very smart marketing scheme. I wasn’t aware of what ALS was! But now i know and I donated. And I’m glad that everyone’s doing it. It’s a genius idea of spreading awareness.

    Also I’m shocked how he writes ‘ice bucket challenge is bad for you’. Bad for me? Donating money to save lifes is not bad. And no ones donating or spreading awareness to amuse themselves.
    Mr. Gilmore should write his next article on how donating money for children’s education or for the disabled is also bad because that’s not an “urgent need”

  93. This article has so many factual and logical errors that others have so thoughtfully pointed out that I won’t add to them.

    I will say this: before Terry Fox embarked on his ‘Marathon of Hope’, cancer research was woefully funded – even negligently funded. With, probably the first real social media campaign, Terry Fox raised awareness and inspired millions of people world-wide to donate to cancer research and created a lasting legacy of social activism around diseases such as these that has had an incredible lasting legacy in fundraising around the world, especially in Canada. Rick Hansen is another great Canadian that comes to mind in using early ‘social media’ to raise awareness and funds to research spinal cord injuries.

    Recall that cancer was hardly researched because of lack of funds prior to Terry Fox. In fact, the fairly ‘rare’ cancer that killed Terry is still under-funded but his legacy funded research in cancer that has benefited millions that suffer from other forms of the disease. Likewise with Hansen, whose efforts have catapulted treatment of spinal cord injuries and diseases.

    Maclean’s should be applauding this approach to raising awareness and funds for disease (and any other cause) research.

    Anything else is a callous and simple-minded knee-jerk reaction to a positive campaign from a group of people looking to benefit/improve the lives of so many (no matter how ‘small’ the number) who were inspired by a wave of social awareness. Much the same as Fox inspired Canadians and eventually the world.

  94. I was shocked to read this offensive garbage on Maclean’s site. Interesting how Scott Gilmore states that ALS research is “not an especially great need” and is “already extremely well funded” but conveniently left out the fact that there is currently no treatment or cure for ALS. Diagnosis is a death sentence – there is no hope and no ‘battle’. Isn’t that reason enough to donate? ALS kills its victims in the most horrific way imaginable. With funding, research could change possibly change that. Scott Gilmore and Maclean’s have dealt an unnecessary blow with their BS story to anyone suffering with this vicious disease, along with their loved ones. Great job guys, I hope you’re proud.

  95. Me: Y’know. The irrationality of humanity really angers me sometimes. The fact that someone can say that it makes more sense to put money toward something that will save more lives than to put it toward something that will save fewer lives and then people become enraged by it really, really angers me. It makes me want those people to not be alive anymore. It makes their value as a human being drop considerably in my eyes. If you want to put your money toward something that will save fewer, go right ahead. There’s nothing wrong with that. It is your money. But don’t tell me that saving more human beings isn’t more worthwhile just because it’s your money or you knew someone who was affected by some disease. All of those people with a disease which kills many, many more are all someone who somebody knows. Why is your personal pain any more important? That is true ignorance. That is arrogance. That is selfishness. It is not what you do, but why you do what you do that defines who you are as a human being.

    If I had ALS, I would still be saying this. If my mother died of ALS, I would still be saying this. Not only would I still be saying this, but I would still be donating my money elsewhere because I care more about humanity as whole and there are other causes which would beyond any shadow of reasonable doubt have a greater benefit for humanity. And if more people don’t start caring about all of humanity rather than just the bits and pieces that they deem important then we’re going to continue to live in this fractured world filled with hate and destruction and selfishness and greed. Of course, after reading these comments I really don’t have very high hopes.

    I don’t subscribe to any notion that I am more morally correct than any of you. In fact, I’m probably a more terrible human being than most of the people I have met. However, at least I can recognize the ridiculousness of this fallacious logic that far too many of you seem to be demonstrating. I just want to close my eyes and pretend that all of you are joking and that the world really isn’t filled with these kinds of people. The kinds of people that inevitably make the world a worse place. You think you’re saving lives. And maybe you are. But not as many as you could be saving. That is a fact.

  96. The idea to donate to a good cause is good.
    People need to realize that it is much suffering in the world.
    But they run ridiculous with this so called “ice bucket challenge”.
    It’s a cheap way to show up on Youtube.
    Not to mention all the wasted water and electricity consumed for making that ice.
    If we want to be ECO-friendly and humanitarian, do not forget that are still people dying of thirst in the world…
    If you want to help, do it without fuss.
    Be generous but humble and discreet, otherwise you’re just a cheap clown.

  97. May I suggest that if you have a cause, instead of complaining about successful fund raisers, create a successful fund raiser for your cause… Simply being jealous is a waste of time and energy that should be spend on your concerns. There are many needs… congrats to the people who figure out how to get them help…

  98. This author is making a lot of assumptions. Is it wrong to donate money because one learned about the cause via a successful marketing campaign? Did the people who created the marketing campaign raise awareness about their cause? Maybe one person living with ALS is equivalent to 500 people living with heart disease…do we quantify that through the person’s suffering, the length time that they live with the disease, the health care costs associated with it? Maybe it costs the health care system $1 000 000 to care for someone who is diagnosed with ALS, versus $50 000 for someone who has heart disease. We don’t know this information. The author doesn’t give this information. I think that it is great that we have the autonomy to make choices about where we donate our money. I think that it is unfortunate that sometimes people with lots of money buy lots of material possessions and give less to charity but it is their choice. It think that it is often curious that people can support free market ideas when they work for them, but are very quick to criticise in a very limited way when they do not. How do you know that each and every person that donated to the ALS campaign did not donate based on 1) need 2) influence and 3) urgency?

  99. Of course every penny counts.
    But who is checking if they poured a bucket or donate some bucks.
    Maybe they do it just for publicity or to brag to friends.
    The rich are eccentric and want to come forward at any cost.
    The poor are often too poor to matter.
    It is important to donate, not to boast that you did.
    For the cases that you consider worthwhile.
    I actually have donated to various humanitarian cases, as much as I did.
    I never praised anyone.
    Important was that I felt a better person to myself.
    And then maybe some unhappy had a better life …

  100. What folks do with their money is their business, plain and simple! As for different diseases taking lives, well one death is too many! I just think the author has a black and white view of the world when it comes to issues like this. There are so many organizations competing for the public dollar when it comes to fund raising. Simply put, many organizations are not happy about the amount of time and money being spent on ALS awareness and donation response. Social Media has reduced the cost of promotion of this campaign to virtually zero dollars, allowing the ALS society a larger amount of money to work with. A lot of what the ALS society was hoping for, was recognition and AWARENESS of the disease. The rest just snowballed from that! I accepted the challenge and was glad to participate and donate! I also got to learn more about ALS. My daughter extended the challenge to her cousin, who refused to do it because it was a ‘waste of water’. This from a girl with a huge, filled, unused swimming pool in her back yard! That was rich! But it was entirely her decision in the end. This issue can be debated until the end of time, but after all is said and done, it is an individual who decides where their money goes! I say well done to the ALS society on the ingenuity of this campaign, and to those who participated and donated. I would love to see mental health organizations come up with similar ideas to use on social media in order to raise awareness of mental health issues and illnesses. That would be great also! Sorry Macleans… you just lost my subscription, I will be sending THAT money elsewhere. It would be better spent, me thinks!

  101. What this article says to me. ” Some people count, some people don’t.”

  102. Interesting the author also is the founder of a charity and seems to me like sour grapes that maybe his donations are down right now? Anyone who’s says “thankfully only 600 died from this is canada last year” needs to give Mcleans a shake in the head for publishing this. And while he mentions plenty of money for research, he fails to mention funding for things like home care, special equipped wheelchairs, home ventilators or full time nursing. My friend Craig was luckily and fortunate to have the means to live out his last excruciating years at home with friends and family but others who cant afford the above mentioned items above have to spend their days in a hospital or hospice. I would love to see the break down of his charities expenditures as ALS currently spends 37% outside of research for the above. I wonder what his salary is for his Building Markets charity?

  103. Funny, ALS is often cited as the reason most Canadians support assisted suicide and yet it is still classified as a rare disease. Good to know–the next time someone uses it as an example, I’ll be quick to correct them. http://www.ireneogrizek.com/2014/08/26/17345/

  104. You’re such a troll, Scott Gilmore. You know what is worse than ‘slacktivism’? The snarky, cynical a-holes who trash slacktivism all the while doing nothing themselves or offering anything other than criticism. You think the ALS challenge is narcissistic? Guess what is WAY more narcissistic? Telling people that they have to donate to charity in very specific ways so as to please you.

    If you’ve ever experienced someone close to you go through ALS, you wouldn’t be so flippant about it. It’s heartbreaking to watch. You want to another difference between ALS and heart disease aside from dollars-per-death stats? Heart disease is often (not always) self-inflicted. ALS is random and unfair.

    Quit sh*tting on people for doing something good. If you disagree with where the money is going, provide an alternative (not just a criticism). Better yet, DO IT YOURSELF. I’ve seen plenty of people do the Ice Bucket Challenge and suggest another charity. And they don’t say it maliciously, or in a snarky and condescending tone. They say “Thanks for the nomination, ALS is a great cause but I’d also like o bring your attention to ___, which is what I will donate to”.

  105. It’s great that people have so many different opinions on the topic. I love reading what everyone has to say, whether I agree with it or not. Unfortunately, a lot of diseases and world disasters go unnoticed. I think the ice bucket challenge is great because before people started dumping water on their heads, I had no idea what ALS was. That’s why it works. People like to be entertained, and I think that’s the only way to capture peoples attention these days because we have grown into a more ignorant society with our noses in our phones. However, I do think that the title of this article is worded wrong. The challenge is not bad for you, it may just lack a call to action in the end. Not everyone will donate, and yes there will always be other organizations that are in more dire need. That’s not to say that ALS is less important, because it’s definitely a scary disease that requires attention. I personally am apposed to donating though big organizations because I don’t know where my money is going. Call it old school, but I don’t trust the system. I think if it’s a ‘Non-for-profit’ organization, then more than 60% should be going to research not just 20-35%. Maybe we would be able to see instant results if that were to happen. I think in the end it’s all about gaining compassion towards humanity, and understanding what others are going through. After all, it can happen to anyone.

  106. Also, you could make your list more simple (and something that i think all charities would appreciate):
    Good reasons to donate:
    1. Any

    Bad reasons to donate:
    1. None

  107. I am pretty disappointed by this article. ALS research does not get enough funding and more importantly doesn’t get the public awareness/media attention it needs. You have obviously never had a loved one pass away from ALS. People are so quick to judge but until you watch your partner who is in his early 30’s pass away from a disease that robs you of your dignity and hope you will never be able to wrap your head around it.

    I knew the media would eventually start complaining about this. They need to complain about this something. The fact that your a politician makes your article have zero weight.

  108. Seriously Mr. Scott Gilmore…But this is a disdainful read. To say that the ALS campaign is a horrible way to make a donation was completely not necessary. I agree that the “ice bucket challenges” may be overblown a bit, however it defeats the purpose if everyone is just doing the challenge and not making a donation, same with movember and so fourth. However, it is a unique way of raising awareness. Plus, Mr. Gilmore states, “thankfully, only about 600 people die from it every year in Canada”. Is that something to be thankful for? Let’s face it, there are many people whom would rather this type of awareness, rather than sit on a computer, sit in front of a tv or read a book, or maybe even being educated by a medical practitioner. Regardless, it gets the point across, just in a different way. What you failed to mention was the 3 diseases named in your article are however contributed in most aspects to how we live our every day lives. These 3 diseases, cancer, heart disease and cerebrovascular disease can either be avoided or prolonged by doing simple everyday things. Such as exercise, healthy eating and no smoking. If people choose to live their lives by not following a healthy lifestyle, should we donate? People need to realize that they increase their risk for the top 3 causes of death by choice. There are some instances where it may be hereditary, but you can definitely prolong getting these types of diseases by having a clean system. My sister has been suffering from Granulomatosis with polyangiitis formely known as Wegener’s Granulomatosis. This is even a rarer disease than ALS that can be found in ten to twenty people per million, and she brings awareness to her disease as much as she can. Regardless if it’s one person, 600 people, or 72,000 people that die because of which ever illness, a life is a life no matter how you dissect it. People are not obligated to make a donation, but are committing a great deed for a wonderful cause.

  109. Hi

    The article is informative. But why doesn’t one appreciate the way ALS has created awareness and their ice bucket challenge chain has caught on social media so well. Other organizations could have thought about the same as well. In my opinion this is truly an innovative and appreciative way of creating awareness. Other organizations seeking funds must learn. That said, there is a positive impact of the ALS challenge. In India, I saw people donating rice to poor with the “rice bucket challenge”. And some non profit organizations provided clean water in areas where it was water struck just to condemn the ALS challenge. At the end of the day its a positive impact on the economy as a whole.

  110. Did you ever consider that, instead of insulting people who want to donate to a good cause, a better use of your time and blog space would be to encourage fundraisers for other causes (those that even you might find worthy) to learn from this example? I realize it must be a terrible shock that people donate money to causes they are made aware of, and will often respond better when humor is involved, but you did admit that this is what people do. Frankly, if getting your point across involves insulting your common man, you might pause to consider whether or not you’re raising a good point.

  111. This article infuriates me. To say it’s not a worthy cause is wrong. You’re devaluing the life of ALS patients and those where familial ALS runs in the family. ALS patients have just as much right to survival as someone with cancer, heart disease, or whatever it may be. It is a terrible disease that has no cure, and the only current treatment available extends a life by 2-3 months (while they will still live miserably). ALS has never received this much buzz. Ever. And after this Ice Bucket Challenge fad is over, their donations will unfortunately go down again. Let ALS charities have their time. This article is insensitive… Find something that devalue human life to complain about.

    • Sorry, I meant “find something else that doesn’t devalue human life to complain about.”

  112. VERY upset and disappointed by this article. There is no such thing as a bad reason to donate to a cause. I dont care if you are selling greasy fries, tapdancing for change, wheelbarrow races ….whatever. IT WORKED…they are getting the money they need. If you knew you were going to die, would you not beg borrow and steal to change it….what if it was your son/daughter, mother/father. You would do anything. So you do what ever works…this worked and the families that are losing their loved ones have some hope that the influx of money will make a difference. Your reporting is irresponsible. If you dont think that being given a deaths sentence stress an URGENCY, a NEED and an INFLUENCE, you have no business putting a pen to paper in public ever again!!

  113. As someone who grows a mustache to raise a few hundred dollars for prostate cancer each year, I have to take mild offense to this. It’s overly simplistic to compare funding raised for ALS research vs. heart disease, which is a bigger killer, especially when it ignores the fact that we know very well what causes heart disease and how to prevent it (outside of genetic factors, if you moderate your alcohol consumption, stop smoking tobacco, eat healthier, and engage in regular physical activity, you’re a lot less likely to develop and die of heart disease).

  114. Scott Gilmore, obviously you have never been diagnosed with a rare disease or had a family member who has been diagnosed with one. Yes, ALS is a rare disease, and yes, my aunt died of it in 1998. You know what else is rare–anal cancer, with which I was diagnosed in 2008. Do you not think people like myself would appreciate having such a campaign as the Ice Bucket Challenge draw attention to a rare disease that people don’t like to talk about, but has affected their life or the life of someone they love? I have nothing against women’s breasts and have two of them myself, but every October, breast cancer is thrown in our faces, like boobs are the most important things to people in this country and we need to save them all. I’m not against that, as my grandmother had breast cancer, which puts me at higher risk for that disease. However, based on my own cancer experience, let me remind you that people should love their butts just as much, or more. Try living without an anus and see how that works out for you. My point is this. Just because more people are diagnosed with a certain disease or illness does not mean that finding a cure for that disease is any more important than finding a cure for something else that affects far fewer people. You know why? Because we are people too. We have spouses, parents, children and grandchildren who do not want to see us die just because we were unlucky enough to get one of the less common diseases.

    I did the Ice Bucket Challenge last Saturday and made a donation, selecting the option of having it all go to research for ALS. I certainly hope that’s where it goes, but just like any donation, do we really know? The one thing that pisses me off about some such organizations is that the people who run them, and I’m referring to the upper echelon, draw huge salaries. I am fine with the intent of the Ice Bucket Challenge, 3-day Walk, etc., etc., but the monies raised need to be used for helping those afflicted, save a reasonable salary for those who head up the organization.

    I sincerely hope you never have to hear the words “You have ALS” or “You have anal cancer” or any other rare disease. It’s a very lonely place to be.

  115. Who are you to tell people where they should donate their own money? What a stupid article.

  116. Of course every person deserves to live. I only wish we think the same about animals and go vegan as soon as possible for a way better world!

  117. It’s people like this author who can turn a beautiful movement into cynical foot dragging.

    Scott Gilmore’s adept at telling you what to do with your money but has little or no credibility when it comes to understanding what it means to support a cause that is close to you. Is he donating to Syria or Ebola? Yeah, I thought so.

  118. I’ve been back and forth with the whole Ice Bucket challenge but honestly this article did nothing more than piss me off, it’s about on par with people arguing that we’re wasting water. Please. I agree that one should consider Need, Influence and Urgency but when you got to the examples for each I lost you. Sure Influence is a good factor but you should combine that with need, take your example. Does Heart Disease actually need more funding? What would be done with that money? More public service annoucements to tell people to get off their ass, go for a walk and stop eating Mc Donalds? I’m pretty sure they’re not going to invent a pill to cure heart attacks anytime soon, those are lifestyle choices. I agree with other comments…how can you say ALS doesn’t deserve the research? Sure the number of deaths are lower than other diseases but I wouldn’t wish this diagnosis on even my worst enemy. As sick as I am of having this all over social media I hope it continues to spite people like you.

  119. How DARE you say that this isn’t a good cause to donate to? Out of those “only 600 people” that died from this awful disease, I am one of the 600 families that lost a loved one two months ago to ALS. We should be thanking God that not more people die from it every year, not looking down upon it and classifying it as a “non urgent” disease. You are an awful, sad person for acting like a disease such as this is no big deal.

  120. I don’t know where to begin.

    1.It may be a rare disease, but it is no less devastating, if not more so than say heart disease. I am not saying heart disease is a walk in the park, but when compared with losing control of every muscle you have, it is less frightening because you do not become a prisoner in your own body.

    2. Life expectancy with ALS is low. Half die within 5 years. and it is a slow death. you basically suffocate.

    3. There is only one drug approved to treat ALS.

  121. you got it all wrong…..every charity is looking for donations…we have walks, bike rides, fund raisers from candy sales to car washes….and i have taken part in them all over the yrs from the march of dimes walk to ms bike rides…..those that want to give will always find the means to contribute…..ALS came up with a very simple way to donate….a challenge…..a water bucket challenge……we have nfl teams issuing challenges to rivals….the pats and the jets started this and it went viral…..now hollywood is in on the act….politicians …to funny…..enjoy the challenge….the ALS challenge but remember to make that donation….its works

  122. Look at all the emotion in this article and thread.

    The article presented no evidence that dollars raised by the Ice Bucket Challenge are cannibalizing other charitable donations. It supposes that the Challenge is taking away dollars from other causes, but this can’t be assumed.

    It does however highlight the fact that people die in much greater numbers to diseases other than ALS. All that can really be taken from this article is that for every $1 you donate to ALS, you should probably be donating $10+ to other causes as well.

  123. I have heard Scott Gilmore speak and I think he’s generally a thoughtful and intelligent person, but he’s way off the mark with this one – and not only because he refers to me and my water-dumping friends as “craven sheep.” I am not a health economist, but I would think that people suffering from relatively rare diseases like ALS may draw greater benefit from research donations, because supply-and-demand would suggest that profit-seeking drug companies are less motivated to develop costly drugs for relatively small patient populations. According to its financial report, in 2013, ALS Canada allocated 29% of its funds for research trials and other forms of research support, and 21% to client services. I think that’s money well spent on this devastating disease. People should not be accused of being ignorant, self-promoting jerks for doing something fun to raise awareness and money for an awful bloody disease that kills 600 Canadians per year. There is money in my bank account and love in my heart for overseas-focussed charities like MSF and closer-to-home orgs like ALS Canada. Who is he to judge which one is more worthy of my financial contribution?

  124. I’m not sure if I’m more insulted by you constantly offending everyone who cares about ALS and takes part in a fun and wonderful way to raise money for a terrible disease, or by you downplaying how awful this disease is? Yes there are LOTS of diseases out there and it would be great if we could all give money to all of them. Heck, I suffer from debilitating migraine headaches and the number of people in America who do is astonishing, yet it is underfunded so not a lot of research has been done that should be. It doesn’t kill you, but I tell you what, you get a terribly one and you sometimes you feel like death would be better than living with migraines. So, tell me, Who are you to tell everyone how awful they are for donating to ALS? What donations do you make and how much? Do you give your time or money to any charity and make a difference in any way or do you just like spouting your mouth and putting everyone who does something good down?

  125. Many diseases have already been cured. All of those cured diseases combined would have killed more people than cancer, but looking at each individually less than cancer. Trying to cure the biggest killer first isn’t the best solution, and won’t necessarily save the most lives. You should NOT put all other medical research on the back burner till cancer is cured. You never know who or when or what disease will have a breakthrough. A cure could be found after this huge surge in funding.

    The ice bucket challenge is great for you, for me, for all of us for so many reasons. It produces awareness, calls people into action, funds research for a cure.

  126. How very cynical. I could wax lyrical about what a canker you are upon society, but what would be the point?
    Exist in your own holier-than-thou, misanthropic misery. I choose not to.

  127. Thank you Scott! All diseases and the suffering they cause are horrible. People can donate to whatever they desire. ALS is a horrible disease and I feel for everyone suffering because of it.

    I donate my dollars to 2-3 charities that mean most to me and that are of high need / have high benefit to society. I don’t need a gimmicky marketing campaign or one that guilts me through peer pressure to donate. Thank you I’ll make my own decisions on my own terms. Obviously there are many out there who are swayed by these kinds of influential marketing campaigns (marketing pshycology in full effect). Kudos to ALS for figuring out how to win as an underdog…though I doubt many people actually know what ALS is and does to you as the marketing campaign was about getting $$ not actually about education or outreach.

  128. Scott,

    Your article dodged the jab, right into the uppercut. You’ll wake up again in short order.

    The Ice Bucket Challenge isn’t bad for you. Why even make such an inflammatory and silly statement?

    Oh, I understand the main points:
    1) Think before you give. Me: Fair ’nuff.
    2) Scott thinks dollars per death is a fair statistic. Me: Ugh, gruesome. And misleading…
    3) Viral is never a reason to do anything. Me: Ah, there is the tell. The giveaway.

    You missed the key point to the whole challenge. It is to have FUN! Pure and simple, enjoy. The joy itself is the reason to do the challenge. Not because it is viral. Is it viral because it is fun.

    I suppose you are still correct that “just” because it is viral you shouldn’t do it. But that is a strawman argument walking away from the river because it’s too wet, right into the forest fire. :)

    Let’s talk about dollars per death. Why pick that metric? Wouldn’t we be better served comparing dollar per suffering? Hard to calculate, you think? How about dollar per person year debilitated by the disease. As you seem to indicate, you know ALS is long-term degeneration. Insidious, painful, and there is no opportunity for the sufferer to improve by changing his/her lifestyle.

    On the other hand, heart condition sufferers frequently can make great progress simply by eating less, eating better, and working out more. Indeed many can be completely cured with an easy regimen. Dollars per death? Bad math. Let’s talk about real suffering.

    Or better yet, maybe try to let some fun into the world. Nothing wrong with thinking about giving. Just don’t rain on the parade of fun along the way. Begone curmudgeonly!

    Let fun reign!

    Papa Tom

  129. My issue with Gilmore’s article is that it tries to persuade to give our money using our logic while offering a model (the death rate to funding dollars ratio) which is logically flawed.

    The ratio of number of deaths to funding dollars as sole indicator of need is flawed because it fails to take into account other variables such as the size of the existing body of knowledge about a given disease. Given that research is about finding out stuff we don’t know, it makes sense that cash is streamed towards research into the diseases we know least about. Gilmore states:

    “last year ALS killed 6,849 people in the U.S., and attracted $23 million for research (a ratio of $3,382 per death). Heart disease, by contrast, killed 596,577 but only raised $54 million (a paltry sum of $90 per death). If you want your donation to make the biggest difference, fund the diseases that need the most money.”

    What this doesn’t take into account is the fact that we already know a lot about heart disease. Crucially, we also know a lot about how heart disease can be treated and certainly how we can help prevent it. ALS on the other hand, largely remains a mystery. We don’t know what causes it and there is no known cure. Which cause really “needs” the most research money then?

  130. It’s a shame that people and their problems are seen only as a statistical percentage.
    That is the real world and leaders are guided by statistics.
    In the real world leaders lead by numbers and not by heart.
    Actually I think world leaders should do a cold shower to see real problems we face.
    So, unfortunately, most people see their own interests.
    In fact many people are too rich to see the troubles of the poor and sick.
    But there are many unresolved issues, especially in underdeveloped countries ….
    If I had to make an agenda of priorities that would be impossible.
    On the other hand, wealthy countries have a clear advantage over those less fortuitous, because the standard of living.
    Here we have the necessary conditions for research and development in medical treatment.
    And it’s easy to make charitable donations.
    It’s a matter of conscience.
    But nobody mentions ebola disease for example?
    It’s still an incurable disease and is more frightening and deadly than ALS …
    Do you have to pour water on the head to try to help those with no luck, right?
    What’s next, parachute jump from a building?

  131. Wow – I am so lucky I saw this article! I don’t know what I would do if it weren’t for such wonderful people like you. I’d probably have to decide for myself what criteria to use to determine which charities would receive my donations.

  132. Tell someone suffering from ALS that you shouldn’t donate to the cause. Take a second and Google ALS and see what a person suffers with when they have this disease. Not to diminish any other horrible disease, but I’m happy to finally have a break from having the same old things thrown in our faces that are more of a money maker than people actually trying to find a cure. Don’t worry, pretty soon everyone will be back to dumping money into cancer charities (try and tell me there is no cure for cancer!) and everyone will once again have forgotten about ALS. Try and tell me that if that if the $70 million that has been raised for ALS was instead given to cancer charities, there would be a cure. Doubtful. This is not a rant against people with cancer, my grandfather died of cancer, my uncle has had cancer and I still feel this way. Am I tired of seeing the bucket challenge? Yes, I think it’s probably run it’s course, but what an awesome thing Peter Frates has managed to do getting this started! Now maybe people will think to add ALS to their yearly charities to donate to, I know I have ever since my former boss, Bob Kenny was diagnosed. Maybe it doesn’t kill as many people a year as some other things, but does that mean we should care less?

  133. You know what’s “bad for you”? Having ALS. Dumping a bucket full of Ice isn’t. If anything this challenge has been a great way to build awareness for a cause to some (including myself) were once ignorant about. Individually each person still decides whether or not to give money, and it’s that persons decision alone. I understand the meaning of the article, but it’s meaning is not found in it’s misleading title.

  134. I can understand the author’s logic, but I also see that this kind of logic creates problems.
    1. Our dollars are better spent on diseases that affect more people.
    This is a dangerous road to take. What this does is designate some people’s suffering as less worthy of a solution because there are less people affected by the same ailment. Can we also use the same logic to say that we don’t need as many researchers working on ALS? Should we start allocating research based on the age-group of the people affected; ex: should we spend less on Alzheimer’s disease because it mostly affects old people? Can you see where this leads? Would you like to tell that to a person with ALS, like this guy: http://www.upworthy.com/the-last-ice-bucket-challenge-you-need-to-see-and-you-really-should-see-it
    2. Ex: $amount/ person with ALS > $/person with heart disease.
    This makes an assumption that it takes the same amount of money to cure the two – it is possible that the disease that affects fewer people can take more money to solve and be more expensive per person.

    This is why this campaign is so brilliant. It took a disease that most people don’t know about, and which is treated as last priority because it affects a small number of people and made people care. At least this time marketing tricks weren’t used to make us buy stuff we don’t need.

  135. To echo some reader opinions: Tired cynical rant, clickbait trash that succeeds only in its discouragement of the spirit of charitable giving among its readers. Gilmore in his readers response claims he never suggests which charities might be a better donation choice but he clearly does that in his article and even provides an insulting little donation guide printout for donating idiots. The worst thing about this kind of clickbait trash is that people who click it and like it and share it will never even bother to read the author’s own admittances of major thought errors proving this pathetic, clickbait dribble all wrong, like the idea that the pool of charitable donations is finite which he admits is all wrong. None of this sounds like journalism from a journalist, but more like “content” from an internet content provider, right up there with “What kind of pastry are you?” quizzes except much more destructive. Granted, he has proven a successful internet content provider, as his original article will continue to make the rounds and be clicked and liked and shared and Macleans stamp of approval will continue to lend legitimacy to these now empty and defunct words. The last point of his bad essay Gilmore is left with to try to defend in his readers response, is that about not following internet fads and it being a terrible reason to donate. Does it really matter, a person’s motives for donating? Unless a viral campaign turns up on my newsfeed trying to raise money to put all the world’s suffering millions out of their misery by dropping a nuclear bomb from space, then I don’t think there is much chance it is posing a threat worthy of writing this kind of article to try to prevent people donating to that cause. I LOVE Graham Milner’s response! My fuller response here: https://medium.com/@madisontymicka/this-article-is-crap-unless-you-agree-that-donating-to-a-small-minority-group-instead-of-to-a-f3e366a6fd54.

  136. If you go around and start policing people’s charity choices and demand that they donate ONLY to a “Need, influence, urgency” criteria and banning all silly viral campaign gimmicks including “Ice buckets, wristbands, or moustaches,” well, you end up with a pretty bleak reality for anyone and everyone that finds themselves or someone they love with a pesky “minority influence disease.” You end up with the kind of world where no one is motivated to do much of anything other than sit alone in front of the computer reading these kinds of hopeless articles and just giving up, ordering a large pizza with all the toppings and eating it all in one sitting over and over until they develop symptoms of heart disease.

  137. If Scott were serious about encouraging others to donate to more causes, he would better spend histime coming up with a silly viral campaign to motivate people on social media sites to donate to heart disease or any other disease of great influence in addition to ALS rather than pathetic, ill-though-out attacks on donating to ALS and other minority influence disease research that is not government funded.

  138. I work for the money I earn so therefore I have the right to decide where it goes and who I should donate it to. Regardless of the novelty of this challenge, it caused people to donate their money that otherwise they probably would not have. While Heart disease may kill more folks than others, there is more treatment available. I think that it is great that the “underdog” of diseases is getting some attention. I am sure, dear writer, you would feel differently if ALS graced your presence. Whether it is novelty, personal conviction or person experience….we all have the right to use our own reasons to donate…anytime and anywhere. Shame on you for turning something that raised money for those suffering and making it into a negative. I agree with the vile human being comment.

  139. I’ve got a lot of problems with this article. And I’m speaking with 16 years experience in the fundraising industry. In order:

    1) Creativity is good. It gets attention. We live in “The Nanny State”, and most of us have been inured to what science needs to solve the problems of disease, figuring that “the government will just take care of it”. It doesn’t.

    2) Much more prevalent ailments like heart disease can EASILY be remedied by well-documented preventions like good nutrition, exercise and quitting smoking – preventions the public has largely ignored. ALS is a disease that is rarely preventable by simple lifestyle choices, and deserves our attention.

    3) If Ebola is such an international crisis, why haven’t the CDC or the WHO adopted what clearly is a winning strategy for research fundraising?

  140. I am appalled by this article and its overall tone. By the year 2040, the WHO has predicted that neurodegenerative diseases will have overtaken cancer as the second-leading cause of death among Canadians. Since ALS is a neuromuscular disease, any research or therapies that can benefit ALS patients might well have a wider application in the future. Therefore, I fail to comprehend how it can be dismissed as insignificant by comparison with more common conditions in 2014. We must surely look ahead. The status quo will not remain as it is now.

    My husband, who coincidentally has been a loyal Macleans subscriber for many years, is now battling bulbar-onset ALS. He had colon cancer four time but it didn’t kill him. ALS, however, will accomplish what cancer could not. He participated in the Ice Bucket challenge, even in his weakened state. He believes that his life has as much value as anyone else’s. Sadly, if patients with relatively rare conditions are marginalized and deemed unworthy of support, then what might this portend for victims of other uncommon but equally dangerous circumstances – societal as well as medical?

    Ebola is mentioned as a more urgent condition. While it is definitely a devastating disease, consider the fact that 140,000 NEW cases of ALS are diagnosed worldwide each year (approximately 384 a day). The mortality rate will be close to 100% for these cases, most of its victims dying within 2-5 years. The Ebola virus has resulted in high mortality in certain areas but it is never 100% and many patients do recover. The disease is somewhat preventable through attention to hygiene and sanitation, unlike ALS which can neither be prevented nor cured (and this, of course, underscores the need for research and clinical trials to change this situation). The two are simply not comparable.

    “Instead of supporting what is most needed, we support what is most amusing.” My husband’s disease is far from “amusing” despite the nature of the Ice Bucket videos themselves. The reality underlying the apparent silliness is anything but funny. Loss of speech, inability to swallow, threat of choking, failure of hand coordination – these are just part of that reality for my husband. Add to these initial symptoms the inability to stand, walk and ultimately to move at all. Throw in a PEG feeding tube, a BiPap breathing device, a motorized scooter and voice amplifier and, ultimately, a power wheelchair – at a total cost of thousands of dollars – and you begin to approach some understanding of what ALS patients and their families must confront. Fortunately, there is growing public awareness of what ALS is and what it does.

    If it were not for ALS Canada, ALS Nova Scotia and the generous donations of countless people eager to help, our family would be in a terrible position. We have been taxpayers throughout our adult lives, have worked in this country, contributed our share and acted as responsible citizens. We’re thankful that Canadians are so willing to consider supporting people like us through their donations. This is not “bad” for them, because they’re making a difference, and it is certainly not “bad” for my husband!

    I suggest that Mr. Gilmore take a walk in the unsteady shoes of an ALS patient, or at least talk to the ones who can still speak. Perhaps the tenor of his thoughts might be radically altered.

  141. Yes there is a huge Heart disease and Diabetes epidemic happening now with a bigger threat to the human race but we already know why this is happening, not in all cases obviously but the majority is down to bad lifestyle choices and symptoms can be controlled and improved. The cause of motor neurone disease is not fully understood yet and when diagnosed you have a very short life sentence with the worst symptoms imaginable (I’ve witnessed a 30 year old friend be diagnosed and deteriorate) I think this is a very worthy cause regardless of the numbers affected.

  142. I have never seen such narrow minded writing before. You do realize that heart disease is PREVENTABLE? And that it is caused by poor eating habits and/or smoking, obesity, lack of exercise, need I say more? Whereas ALS is NOT preventable! In most scenarios, it’s an inherited disease. In fact 1 out of 10 cases. But that one, they can not say what inherently caused it. Shame on you!!

  143. As someone who’s father is currently fighting ALS, I find this article insensitive and off-base. Your argument is entirely utilitarian and to suggest that this campaign is significantly undermining other issues is totally misleading. Notable Ice Bucket challenge participants such as Bill Gates have donated BILLIONS to many other causes this year alone, making the amount raised by ALSA a paltry amount. Heart disease research has on average raised an amount in the 1.2 billion dollar ballpark annually according to the NIH, far more than $54 million you claim. However, I guess it’s easier to write inflammatory click-bait articles to bump your ad impressions, tweet a few made up infographics to gain some followers, throw in some oh-so-popular buzzfeed style bullet points, and judge people from the sidelines than it is to make a personal sacrifice and contribute something of value like so many ice bucket challenge takers have.

    What a disgrace.


  144. I’m a two time cancer survivor. Just had a kidney removed in January. I did the ALS challenge and made a donation as well. I understand what the writer is saying about putting your donation to work however this type of campaign will resonate with the younger generation and hopefully teach them about giving. Truth be told I would rather die from cancer than become trapped within my own body

  145. I actually really dislike this article for a few reasons:
    1. The writer of it suffers from classic puritanical notions about charity. If you want to know what I’m talking about watch this Ted Talk:
    2. The writer used lazy and misguided stats to point out that the funding per death for ALS exceeds the funding per death for Heart Disease but did not mention that even at ALS’s current record windfall it’s still less than half of what breast cancer funding per death averages every year. He also fails to mention that heart disease is well understood and most incidences of it can be avoided and/or managed with better lifestyle choices. Meanwhile ALS is poorly understood, there are no treatments beyond palliative care and most people go from fully functional to immobile, then unable to speak and finally pass away within 3-5 years of the onset of the disease.
    3. People need to stop hating on successful charity fundraising events as if they are stealing money from the poor. If people can afford the latest new iPhone/Galaxy S…whatever every year they can afford to give to worthy causes.

  146. The Ice Bucket Challenge was never created to raise money. It was created to raise awareness and it has done so. Barely anybody knew what ALS was until now.

  147. Pretty deep for a author in a magazine that pretty much everyone who reads it is only doing so to kill time and flip pages while waiting in their appointments in the doctors office. Heck, if it wasn’t for doctors offices and their crappy magazines, would there even still be a Macleans? Next visit, I’m reading the boating magazine or a National Geographic from 1983 in protest.

  148. The author of this article should feel deeply ashamed of themselves.

  149. First off why the heck would anyone donate to Syria?? That money would go straight into the pockets of Hamas, and in turn straight to ISIS, our number 1 threat right now (just like the weapons we gave Syria).

  150. I agree with a lot of the comments that you can donate to whichever charity you choose, but the bigger picture being lost here is that many people are donating simply based on a gimmick and not on research into the charity. Facebook is filled with teenagers and children (and I’m guessing adults as well) doing the ice bucket challenge simply because it’s the thing to do right now. When I was challenged to pour a bucket of ice over my head, I did not rush out and do it so that I could put a video on FB simply because I was told to. Instead, I chose to stay dry and donate money to the Heart and Stroke Foundation because heart disease runs in my family.

  151. I think Scott Gilmore hit the nail on the head on all points. People need to give a rational response and not a strictly an emotional one. I never took his article to mean that ALS is unworthy of charity dollars; I did think that many injected that notion into his article on their own. Metaphorically speaking I took his article to mean this: If you arrived at an emergency crash scene would you save one person at the expense of four others? Or would you sacrifice the one to save the other four? It is never about a question of one’s life being of less value than others. Regarding issues of trendiness and being hip, it makes me think of how some might choose to save a celebrity crash victim in the same scenario (largely because they were the big name, unlike the others) and then deny that had anything to do with decision, perhaps saying “…he was just a person that needed help”. Meanwhile of course, the other four die.

  152. All hail Mr. Gilmore, the lord god almighty who shall decide who is or is not worthy of a continuance of their life. You sir, are an unfeeling emotionless robot. I have lost all faith in this poor excuse for a publication.

  153. If this article seems offensive to you, my advice is to take the personal out of it, or leave it in and at least be honest. There is a lot of truth here, even if its tough to swallow. Big charities use whatever means necessary to fundraise, including the manipulation of our emotions, the families of victims, and the victims themselves to get our support. The Ice Bucket challenge along with fads like Movember are proving that in most people’s eyes the most deserving causes are the ones with the funnest and most viral marketing schemes, rather than the causes most in need of support. ALS of course is a terrible disease and by all means donate, but do it with your eyes open.

    The author of this article is raising our awareness of a social ill that is a greater threat to us every day: intellectual dependence and a lack of responsible, critical thinking! There’s a great documentary called Pink Ribbons, Inc that focusses on this issue using breast cancer as a case study.

    • Seandc – You show very little understanding of human nature. We all make hundreds of decisions every day, some emotional some rational and most are somewhere in between. Something like donating money to a worthy cause is logically going to be an emotional decision. Emotional decisions are motivated by emotional appeals. Selecting my IRA investments are probably a little more rational, so ads on investments tend to focus more on facts and figures a bit less than ice buckets or wrist bands. Your solution calls for people to act against human nature. That is a fools errand.

  154. HUMM…You see, this is their ONE AND ONLY chance for the ALS people to be heard so it’s they moment to do it (we all know about heart diseases, ebola, blabla…) so of course I DON’T AGREE with you.

  155. Scott, you are missing the forrest for the trees. You are assuming the $70m would have gone to other causes were it not for this challenge. I think you are dead wrong. The vast majority of the $70m simply would not have gone to any charity. It would have purchased a new app and a meal at Olive Garden. With out these marketing efforts over all donations would be far less than if everyone was forced to act ‘rationally’ and do the research…

  156. Though I firmly believe in the freedom of the press and your constitutional right to say any back sassed thing you want, I must say that this little clip of wisdom set me on my toes.
    Who in their right mind would say there is not an urgent need to help the “human beings” that are afflicted with this awful illness. Do you know anyone who has ALS?! I do, it runs in my family. Do not in anyway shape or form think that this does not effect me. Not enough people are dieing?!!!
    Get a freaking clue! If one person dies from a sickness then that is one da** person too many! Shame on you!
    If you do not want to donate then don’t. You do not have the right to tell anyone else not to.

  157. Well Scott you clearly have a heart made up of ice. I had a sister in law die of ALS last year, which means she was one of those 600 people who died from last year. You just made seem like she is not important, thank you very much. This ice bucket challenge has made those who have ALS feel important about the awareness of it and giving them the hope that with more donations that a cure may be found. Since in some incidents ALS runs in the family and even if someone is dying of it this awareness gives them hope if someone else gets it they may be cured. I had two people close to me die of cancer, but my sister in law with ALS had it worse and suffered more.
    It was someone with ALS who started the ice bucket challenge and just took on from there. Im sure a month down the road it will probably die off. But this certainly was a unique way to get the awareness out.
    I know after this article I will never read Maclean’s again. This is most disgusting rubbish I have ever read. Magazine is supposed to be about human concerns and you representation of the magazine made a lot of people feel like a piece a **ap.

  158. Folks, don’t be sucked in by the cheap, sensational editorial decision to publish this article. It’s a pointless debate because everyone is right. We should donate where the need exists and ALS does deserve your contributions.

    My issue is why Maclean’s would try to make controversy and conflict over how and why people choose to help others?? Shouldn’t a national news magazine take a pass on tactics typically reserved for the Jerry Springers of the media world.

    As well, to publish an article by the leader of an organization that also depends on donations is just poor editorial judgement.

    Let’s just donate and not argue about it. If you do want to comment, I think it should be to shame Maclean’s for this cheap editorial stunt that pits people who care against one another. I’d cancel my subscription, but I don’t have one.

  159. Fact 1: 5,600 people are diagnosed each year with ALS. Fact 2: Cancer is the most funded research of all, in the billions annually. Fact 3: NCI is a federal agency. You are already donating to cancer research and have been since its inception. Fact 4: ALSA is a privately funded association.. They are the only non-profit searching for a cure to ALS which could also break new ground on cures of other diseases! So, compare billions of Government dollars going to Cancer research to a couple of million for ALS. What’s wrong with a good boost for a good cause? The writer of this article obviously does not have someone in their family suffering from ALS. And there is always a handful of people that default to going against the grain of common culture. They thrive on broadcasting to everyone in a self promoting way.. ‘Hey, I thought of an angle that no one has thought of yet! Aren’t I special?’ Talk about attention seeking. How many articles has this person written? Oh, 1.
    Save the hate for a worthy adversary.

  160. What a bunch of clap trap. Its obvious this writer has not had a family member suffer from ALS as I have and besides who the hell is he to make such a judgement about ALS.

  161. Well, you took a strong stance of displeasure suggesting the ALS ice-bucket challenge as being “bad for you” which (respectfully) I don’t think is necessarily true or useful. I do agree with your critique of slacktivism and that donating because of a viral fad is not the ideal situation in which to donate. However, that being said, it still supports a worthwhile charitable cause, regardless of your intentions for donating or doing the challenge itself. Further, it seems abundantly clear how successful the marketing campaign has been. If you donated to ALS on your own terms or perhaps anonymously that is of course, a good thing to do. The ALS ice-bucket challenge took it a step further which included a fun and inclusive way to get more people involved and interested in ALS. I don’t see that as a bad thing. In many ways I can see that as more useful than donating privately on your own terms. Getting people excited to be involved in supporting a cause such as ALS research seems like a genuinely good and prosocial thing to engage in.
    Even if many people failed to donate, but still shared their video of the challenge it could be a good thing as a type of token support (whether or not it is for superficial reasons, or perhaps there are people doing the challenge that cannot afford to make donations). It would still have the impact of other people taking the challenge, creating the potential for money and awareness being raised which could perhaps change behaviors or research drastically as a type of more meaningful support. If no money had been raised from this ice-bucket challenge it would still at minimum have created an acute sense of awareness that ALS is a serious issue (or at least, water conservation is a serious concern). I am suggesting that even if you believed that the majority of people did not donate when doing the challenge, or only did the challenge as a type of narcissistic form of self-promotion, that it would still be a good thing. Social media posts do indeed have a type of monetary and behavioral value which can have an enormous impact in helping worthwhile causes (that are not limited to ALS research).
    As to your test for what money should be spent on, I do agree this test could be useful in many ways but applying that test to everything people choose to spend money on doesn’t seem like it would ever be a , most of which I don’t consider reality. There is always going to be irrational spending that people do but this genuinely seems like a good thing to be putting money towards (even if you believe there are more urgent matters). People can spend money on far worse things than giving to a worthwhile charity. If you applied that test you suggested to all things we spend money on, that would eliminate anything that isn’t of the highest concern to all of society. It would mean that we would no longer spend money on entertainment or other less urgent areas of human interest. I realize you are probably not trying to suggest this and that perhaps you meant this applied only to research areas pertaining to disease. Unfortunately, I have had the displeasure of reading some poorly thought out comments on facebook regarding this article. You can of course tell me that I need to find smarter friends but my point is that articles like yours are often digested without any critical thought about the potential application of these sentiments or the ALS ice-bucket challenge itself. I do see a silver lining here also, where articles like this suggest there are other charitable causes. This means that the ALS ice-bucket challenge not only was a major success of its own but also in its criticism.
    ALS may not be as common as some of the other diseases that need our attention, but that doesn’t mean ALS is not worth our consideration or support. Other issues of course do indeed deserve our support. Perhaps there is something to be learned from the ALS ice-bucket challenge that could help raise support for these other worthwhile charities. Where I disagree entirely with your stance is that I don’t think criticizing or downplaying ALS is going to be effective. ALS in many ways can be scarier and more difficult to live with than dying from heart disease. I am not attempting to downplay heart disease which you mentioned in your article, it is a serious and worthwhile concern. I am just suggesting that if you do not understand the impacts of ALS (to the sufferers as well as their families) and are openly dismissing how devastating ALS is, perhaps condemnation of a great cause is not the stance to take. ALS does not have a monopoly on charitable donations. You are free to donate your money wherever you wish. Perhaps the success and criticisms aimed towards the ALS ice-bucket challenge can be used as a learning tool towards creating other successful marketing campaigns for worthwhile causes.
    I sometimes wonder why people criticize other people for giving to worthwhile causes, or make complaints about other causes being more important. I often find that it is articles similar to yours that can be a platform for which other indignant or myopic criticism can be sheltered behind. It seems that this type of criticism could deter prosocial spending, charitable donations, or it could offend the people suffering from ALS and their families, as well as the people trying to do a good thing for the right reasons. If you are more concerned about other worthwhile causes you can do something about it without belittling other worthwhile causes or shaming the people that do want to help.
    I want to make it clear that I do think you are a talented and persuasive writer. I unfortunately, am neither of those things. An article from MacLean’s holds more credibility, authority and influential weight than anything I am capable of writing, resulting in an impact that can be much more meaningful than my own. I perhaps have no arguments that could change your opinions about this issue. My criticism isn’t towards your writing style or in any way directed towards you, but rather it is about the impact your article could potentially have on readers. Perhaps you wanted to get people thinking about why they do the things they do, which I think is a great idea but it seems clear that many people do not think about articles like this in the way they were perhaps intended. I don’t have any personal connections to anyone who has had ALS, I do enjoy and respect what Stephen Hawking has accomplished in his field of expertise and his contributions to science. He has lived with ALS for some time now and I would imagine he would be happy to see public concern and support for ALS research.

  162. well i realize ALS is an important issue, my uncle currently suffers from it, and i speak as a family member when i say there are more important issues needing to be resolved, more people die of malaria in 2 days than ALS does in a year. 300-600 million people suffer from it a year and an estimated 1.2 million people die from it a year, most cases its in children under 5, im not saying ALS shouldn’t be recognized as a deathly disease but i feel like theres bigger fish to fry as far as deathly diseases in concerned

  163. As a so far survivor (5 years and counting) of stage 3b ovarian cancer, I find your comments about ALS fundraising reprehensible. I’m sure you would feel much differently if YOU, or someone YOU LOVED, were afflicted by this awful disease. It doesn’t matter what the disease is, or how many are afflicted, it is the loss of a life that is important. I’m sure you would feel this way if it was your life on the line or that of your wife (husband) or child. I was given less than a 25 % chance of living this long; my oncologists are surprised that I have made it this far. What gives you the right to say that someone with a less common disease is less worthy of the investigation to treat or eliminate the disease they are battling??? Because YOU are more likely to be afflicted by cancer??? What if the person who dies from ALS is the one who would have found the answer to beat cancer??? Ever think of that???

    • exactly… i am sure the cancer (insert non profit name here) would love to have half of those dollars to treat and find a cure for the 14,000! women who die every year from that disease.

      How about ALS send some money over to their cause?

  164. THANK YOU for this article. God for bid, if we tell the truth about a thing.

    Good work!

  165. One of the biggest challenges the various ALS Societies face, (and all other worthwhile causes that are not one of the big 5 – Cancer, Heart Disease, Stroke, MS, AIDS/HIV), it that it is a STRUGGLE to get the slightest bit of attention and raise enough money just meet the most BASIC funding needs.

    These other causes are hugely important, but they are SO WELL FUNDED AND PUBLICIZED they end up completely dwarfing the needs of so many other worthwhile causes.

    The logic of this Article is essentially “don’t bother helping the little guys who really struggle to find funding, instead, just keep pouring your money into the causes that have budgets that exceed the GNP of most of the world’s smaller countries.” Also… “Meh, ALS only devastates a FEW people, so… don’t worry about it.”

    In fact, there are approximately 700 deaths per year (as well as approximately 700 new diagnoses per year), in Canada, from ALS, and, at any given time, there are approximately 3,000 people in Canada living with the disease. For each person living with the disease there are, on average, 5 family members directly affected by the necessary physical care and ultimate death of each ALS patient, not to mention the dozens upon dozens of friends and extended family also affected by the ALS patients’ care and ultimate death.

    Finally, if you have EVER WITNESSED what ALS does to a person you would not hesitate for one second to donate to help find provide the equipment necessary to care for an ALS patient, let alone treatments or, maybe even a cure this TERRIBLE disease. And that’s the point.

    MANY of the families who care for an ALS patient don’t even have the means to be able to provide BASIC CARE for their family members. (This is the EQUIPMENT factor, nevermind treatments or cures.) If you have ANY doubts that ALS is a worthwhile or necessary cause, PLEASE go spend some time with a family or patient suffering with the disease. I GUARANTEE you will have a change of heart.

  166. This just blew my mind, really just wanted to punch this author in the face. Many heart disease patients get this disease from overeating, smoking, basically it comes from a person abusing their own body and they have control of it. 29 years ago I lost my mother to ALS, she was only 43. ALS is not something one brings on oneself, that we know of because THERE HAS NOT BEEN ENOUGH RESEARCH TO FIND OUT WHAT CAUSES IT!!! That’s what the ice bucket challenge is about, to raise not only funding but awareness that it is not as rare as it used to be and we need to know how to avoid getting it. If you don’t want heart disease, take care of yourself the way your doctor tells you to. If you don’t want ebola, don’t be around it. They know what cause it too. My husband has type 1 diabetes, has had it for 32 years. He was a child and it was inherited. There is no cure for that yet but we donate to the cause by paying over $500 a month just for insulin alone. I agree with a previous comment that people donate to what hits closest to home and I think that’s fair. But to intentionally downgrade a disease you know absolutely nothing about is just a waste of internet space.

  167. “Instead of supporting what is most needed, we support what is most amusing.” This particular comment chaps my butt…there is NOTHING amusing about ALS…and I think the public has become aware of just how horrible it is for those that are stricken with it…as well as their families and friends. For them…it’s pretty dang urgent. ALS does not have a known cause…they are just lucky I guess. Lets look at lung cancer…the leading cancer killer according to the ALA. They estimate that active smoking is responsible for 90% of lung cancer cases. Smoking, obesity, diet, use of drugs and alcohol, and uncontrolled diabetes all contribute to heart disease. Am I saying those are unworthy causes?…no…just pointing out that there are lots of factors to think about and someone’s decision to help another human being is not one I plan to knock…whomever that might be and for whatever reason. I am willing to bet that many of those who regularly contribute to cancer and heart disease have been touched by it…and will not reduce their contributions because they threw a few bucks at ALS. Ridiculous.

  168. donate to a charity and see 70% of your donation going to pay wages, OR
    donate the money directly to an als sufferer or half to each, you might not receive a tax deduction for half but it will sure help the families.

    Is this gamble clown trying to garner more donations to his charity??

  169. M. Gilmore, your article is an insult to the ‘lesser’ causes. Animals, environment, battered women, etc. I get it, it’s not ‘urgent’. Less people are dying. So, we should stop sending money to these worthwhile causes? Good for ALS, I say, they found a fantastic ‘marketing ploy’ (for want of a better expression) to make their cause known. The amount I gave them doesn’t take away the contribution I make to other worthwhile causes, including cancer research. Your article is shameful.

  170. Once you have lost a loved one to this horrible disease it becomes irrelevant how rare it is . . . it is a horrible death sentence that I would not wish upon my most hated enemy, not even the Harpocrite! Scott Gilmore has just failed journalism 101 in my books, journalists report on facts, they should not include their personal feelings, just the facts!

  171. I agree with you in part that to decide where your money goes on the basis of what goes viral on you tube – i.e. on fashion – is not a rational course of action.

    I disagree with you on several other counts:

    Why do people give money to good causes?
    to appease a sense of guilt
    to show off their philanthropic nature or their wealth
    to avoid looking mean when everyone else is giving
    to be part of a communal endeavour
    to feel that they are doing something about a situation otherwise beyond their control
    to advance some cause in which they believe
    to carry out a perceived obligation to give away some portion of your wealth
    to feel that something useful is being done with surplus money

    If you look at that range of motives, you will see that many arise not from simple rational calculation, but are driven by some emotion. That means that your set of rational choices as to where money should go does not apply to all decisions to give money to charity, any more than it does when giving to other people at Christmas.

    The ice-bucket phenomenon, like similar ones, is driven mostly by the “communal endeavour” motive. In quite a few cases the nature of ALS will be brought home to someone and they will give money partly because they want to feel that they are doing something about a matter whose awfulness is actually in front of them.

    Your analysis of what to do with your money is, rationally, quite sound. BUT it misses out an important truth – that the act of giving itself is not, usually, based on a rational calculation. When we decide to give money to an organisation which is doing something that may take years to benefit a group of people who may be unknown to us, it is usually some emotional pull which prompts us.

    Your calculation list would apply if the donor was, say, acting out what they saw as a religious duty to give away ten percent of what they earned. That is to say that they have a pre-determined amount which they have to give away but no duty specifies what cause the money has to support.

    Those who put their hands in their pockets following a silly stunt or because they are faced with a relative or friend suffering in front of them are not carrying out a fundamentally rational choice. The irrationality is reflected not only in the decision of which charity to support, but in the decision to give itself.

    That being the case it is neither surprising nor illogical that the charity which has managed to stimulate that impulse to give money is the one which benefits from the money given.

    One more suggestion: there is one condition which you have missed out when looking at the total effect on Canadians – or any other Western nation. Dementia is rarely listed as an actual cause of death in the official statistics, but it is already causing misery to many. If life expectancy continues to rise then in the future the proportion of the population suffering from dementia will rise. In terms of amount of misery caused, dementia has a high rate – not because of the physical pain, but because many with dementia are themselves unhappy and the distress caused to the immediate family is huge. And it can go on for many years, destroying the person inside whilst their body keeps on going.

    Dementia research is woefully underfunded and anyone seeing a parent, a spouse or a sibling nearing 80 is going to start calculating, “1 in 4 over 80” and watching in fear. In terms of impact, it is soon going to be there with cancer in the number of those affected directly or indirectly.

  172. Terrible article from a terrible author. You want people to donate more money to a preventable cause in heart disease vs. ALS, a neurodegenerative condition that cannot be prevented or cured? People know not to eat at McDonald’s and sit on the couch, they know not to smoke and drink all day…..what would the money possibly go to? There is no cure for apathy! Way to knock down a goos thing in this campaign that has raised awareness for a disease state that needs it.

  173. This article is so idiotic. The reason why the ALS association deserves donations is not because there is a great need for it in america. They deserve it because those 6,000 people who die from it every year die a slow, painful, and extremely terrifying death. Their bodies become paralyzed yet their minds remain awake, well up until their deaths. It’s horrible!

    This author makes it seem like you should give to charities that give back to yourself. Stupid! You are supposed to give to charities to help others.

  174. What a horrible article. Sometimes one donates to a charity for reasons other than the three points you outline. How about personal reasons? Seeing, experiencing, and living through a loved one suffering a long agenizing death. Is that OK Scott Gilmore? Can donate to that charity? Go out and find something newsworthy to comment on rather your own personal agenda.

    To be honest, its pretty transparent that the title and article are here for click bait.

  175. I refuse to take part in this fad that the sheeple are taking part in. And if I get challenged I will say no way.

  176. OK, so many struck nerves and hurt feelings in these responses. All I wanted to chime in to say is this: It’s true…people should be free to give to whatever charity they so desire. BUT! The charitable organizations should be mindful not to kick OTHER charitable organizations in the teeth trying to get their own needs met. I totally GET that ALS is a horrible disease, and I feel like those sufferers deserve help REGARDLESS of the numbers. But! How do they think their little publicity, attention-seeking stunt makes those of us water conservation organizations feel? The irony here is that many of us are no better informed about ALS than before all this started. The ice-bucket challenge itself has overshadowed what should have been the more important result of the whole campaign: ALS awareness. What we see is colossal amounts of wasted water…and a bunch of band-wagon jumpin’, attention-seeking clones who donated in exchange to get their face/challenge posted somewhere. The organzation could’ve just as soon had a challenge where people were stopped randomly in the streets and asked to name 3 valid reasons to support ALS. At least it would’ve challenged folks to go READ up on the condition and perhaps been better informed before donating. Consider this:
    Annual deaths caused by ALS: 5,600
    Annual deaths from lack of access to clean water: 3,400,000
    Now there’s a REAL challenge for you!

    The author made a very valid point. Worthy cause. Bad approach. Next time the ALS wants to go on an all-out campaign for money (and attention), I pray they’ll not do it at the expense of a precious (and in many places, SCARCE) natural resource!!!

    Sadly, I’d be willing bet this “nonprofit” organization’s heads are laughing all the way to the bank! :-(

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