Why I won’t be doing the Ice Bucket Challenge

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Image courtesy of Rachel Riley/express.co.uk

Image courtesy of Rachel Riley/express.co.uk Please note that Rachel did not do the challenge for the ALSA or MNDA. She participated for the James McCarthy Foundation and the use of the photo is purely for aesthetic reasons as most other pictures are bad quality.

 I haven’t yet been nominated for the ice bucket challenge and if I do, I will not be taking part. This is not to judge anyone else who has done it. Many people that I care about have done the challenge and I know their heart is in the right place. However, I do believe some people have simply jumped on the bandwagon with little knowledge of the disease or where their money is actually going (I do wonder if everyone who has done the challenge has even donated). I don’t mean to deny that raising awareness and money for a cause that was not well known is a good thing. Amyotrophic lateral sclerosis (more commonly known as “Lou Gehrig’s disease” in America or “Motor Neurone Disease” in the UK) is an awful, debilitating illness and I truly sympathise with sufferers and their families. However, I simply cannot condone the behaviour of the charities involved with it.

The American ALS Association admitted last year that only 27% of donations to their charity actually goes towards research. Other areas that money went to were “Fundraising”, “Administration”, “Patient and community services” and a whopping $8.5 million dollars to the highest paid part, “Public and professional education”. It all looks pretty straightforward and fair, doesn’t it? Well it isn’t. This extremely enlightening article examined the charities tax returns for 2013 and found that last year, over 50% of all money made by ALS appeared to line the pockets of the millionaires running the charity and others working for it. The CEO alone made well over $300 000 dollars last year. The largest amount of what was left went towards “Grants and other assistance to governments and organizations in the United States” and the article explains “Almost all of these recipients are medical schools, with strong ties to the pharmaceutical industry.” There is evidence of viable non-drugs solutions that help sufferers of ALS such as a strict ketogenic diet containing coconut oil, but the charity has not done any research on any of them. The reason being because they support the corporate giant that is the pharmaceutical industry. This article contains reviews of over 500 studies into natural approaches to ALS.

Another point I’d like to make is that ALS is extemely rare. There are about 5000 people in the UK with the condition and approximately 5600 people are diagnosed each year in the US. My aim is not to speculate that any one person is more in need of help than another, however the charity has already made in excess of $70 million dollars which is disproportionate to the amount of sufferers. This article states “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).”

Not only that, this year 3.4 million people will die from a water related disease and 780 million people do not have access to clean water. And yet thousands of us have chucked this precious resource over our heads? 

Both the ALSA and British Motor Neurone Disease Association use animal testing in their research which evidence suggests is unnecessary for this disease because humans and animals do not react to ALS in the same way. More often than not, tests conducted on animals do not have the same result as when they go onto human stages, thus rendering the animals pain and suffering totally worthless. Due to this, I don’t understand why it’s still considered acceptable to use animals for research into ALS. In addition, many other charities have stopped testing on animals preferring to use alternative methods. This article states “mouse experiments have been criticised in the scientific literature for the ‘poor correlation’ between data generated in labs from animal ‘models’ and the clinical reality. That so many drugs have ‘succeeded’ in animal tests but have gone on to fail in human clinical trials is evidence that a more rational research strategy is long overdue.”

Neurologist Aysha Akhtar has published an article on the Huffington Post entitled “In Defense of Pamela Anderson”. Pamela came under media scrutiny when she spoke out that she would not do the challenge due to the fact that the ALSA tested on animals. Aysha cares for patients with ALS and is the principle investigator of grant-funded research. She details in her post why animal testing is simply ineffective towards finding a cure for ALS and it is well worth a read to understand exactly why it doesn’t work.  She explains “ALS is a uniquely human disease. Researchers have artificially created animals who show some symptoms that resemble ALS. But as in so many disease areas, the animal “models” only mimic some of the symptoms of ALS and they differ in what symptoms they produce and the causes behind those symptoms. Thus these animal models are extremely poor substitutes for studying uniquely human diseases.”

The ALSA have continually funded research to create different animal “models” of the disease, each of which have gone on to be proved useless. One mouse model usually died from bowel obstructions when given the disease whereas humans with ALS normally die due to the inability to breathe and muscle wasting. Aysha goes on to say “my greatest fear is that we may have found the cure long ago, but it was abandoned because of misleading animal experiments. Drugs that could have worked in humans may have been tossed out because they did not work in mice.

We need to be smart and strategic with how we use our research dollars. How much closer would we be to a cure today if instead of wasting millions of dollars on failed animal experiments, the money had been used to create more effective human-based testing methods that accurately recreated the disease?”

The ALSA has not yet invested in a cure or anything even close to a cure since it began in 1985. Frankly, the sufferers of this illness deserve better than what the charity is doing. There is glaring evidence of the ineffectiveness of animal testing yet the ALSA and the MNDA continue to fund it. They will not fund natural approaches and the only viable reason for not doing so is keeping the big bucks pharmaceutical industry in their back pockets. The ALSA and MNDA should spend their money on funding cutting-edge, human based technologies and conducting studies directly relevant to humans and perhaps then they would be closer to actually curing this awful disease.

Disclaimer
This blog post is predominantly opinion-based. This post does not aim to discourage people from donating to the ALSA, MNDA or to any other charity. This post does not seek to discredit ALS sufferers and their families. Views on animal-testing and charity are my own and I do not seek to influence or change opinion. All of the facts and figures cited in this post have been researched using trusted resources however I am not responsible for any errors.

Follow me on twitter @_oliviaeaton

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59 thoughts on “Why I won’t be doing the Ice Bucket Challenge

  1. i said the exact same thing as to why I would not participate, I visited Africa a decade ago and the experience has never left me and when i see bucket loads of water thrown over people I remember a little boy who had to walk 26 miles to get clean water for his family everyday.

    • anonymous e

      You did not visit the WHOLE of Africa, it’s a continent, be specific. Im tired of ignorant people like you suggesting that EVERYWHERE in Africa is a fucking desert with no water, I am from there and go back on holiday, I never see these people as they are genuinely minority and not the majority that the media love to portray. Second water is a natural compound, it will evaporate back into the atmosphere or will soak into the ground, so exactly how is the water wasted? Were you planning to put the water in a parcel and post it over?

      • wow, yeah water is a natural compound that will go back into the ground but what if people dont have the means to access it? or maybe once it goes back into the ground, its then contaminated? or just MAYBE your water was stolen by the Coca-Cola industry and shipped to one of their factories….
        be grateful for what you have. no matter what, you shouldnt waste. or make ignorant comments….

  2. I’m a details kind of person. Assuming you have the details correct, and from the links it appears you do. You state some very clear relationships in our present healthcare system and science community that are troubling. But, not surprising.

    The adage, “follow the money” is what led you. Well done, we need more like you.

    The “selfie” America has walked away from doing for others and now we do for ourselves. The leaders of the ALS and other organizations have done the same. Their selfish actions are just a logical result of what we’ve allowed to happen to our culture.

    I’ll follow your next post with interest.

    • Thanks Don, I’m really glad you found it informative. It’s so important to back up information like this with facts which is what I’ve tried to do.

      The comments in the article from the neurologist are what really struck me. A woman who leads research into ALS and cares for patients who is willing to publicly speak out against the means of research that the ALS are doing really says it all for me. She’s effectively putting her reputation on the line but clearly feels very passionately about the issue. Perhaps if there were more like her it would encourage the ALSA to try different and more effective research methods.

      I do agree with you there, as I’ve mentioned in another reply I do understand that not all of your donation can go to research, but over 50% towards salaries is just obscene if you ask me.

      • Anon

        Yeah, over 50% towards salaries is just ridiculous. I mean, why should the people running an organisation with the sole purpose of curing one of the most frightening conditions known to man, or those doing the research get a decent wage? I mean, realistically their salaries are pretty poor for CEOs and directors, especially compared to other industries, but yeah, the people doing the work should do it out of the kindness of their hearts. Not that they need to do the research anyway. After all these years who knew that simply having coconut oil and changing your diet could cure you of every disease EVER! Science!

        It’s so refreshing to find a blogger who’s not trying to jump on the back of virals by posting poorly researched blog posts fuelled by other poorly researched blog posts to justify their half baked, self righteous, pretentious click bait opinions. Good work!

      • JAY CURNOW

        Although I agree with you entirely re the above …I also feel that far too much of the donations received are being used to increase the profits of the charities themselves by pandering to the greed of the general public by spending excessive amounts on lottery tickets & prize draws etc;…. Most of the Better known charities especially those involved with cancer research sponsor firms that choose the cheap option of using animals instead of investing in already available Technological alternatives!….which I am TOTALLY AGAINST!…..But if the younger generation discover that fundraising can be both challenging as well as fun…they could become a force to be reckoned with in demanding the right to decide what that money is best spent on!…Don’t you think?….Sometimes it pays to think “Outside the Box!”

      • Tracylou

        Hi Olivia,
        I totally agree with your blog. People do jump on the bandwagon – it was the same with ‘no make up selfies’.. People just do it because others do, without any insight to how the charity operates. Cancer research is another charity that tests on animals, and refuses to stop doing it, saying that it’s the ‘law’ – well if that’s the case, why do not all charities test on animals. Good on you, for putting your opinions across..!

    • Ben

      If you like details then why not pay heed to this journalists lack of them Let me clarify a little of what i mean. Here is a direct quote from the article “over 50% of all money made by ALS appeared to line the pockets of the millionaires running the charity and others working for it. The CEO alone made well over $300 000 [£180,000] dollars last year. The largest amount of what was left went towards “Grants and other assistance to governments and organizations in the United States” and the article explains “Almost all of these recipients are medical schools, with strong ties to the pharmaceutical industry.”

      In comparison of pay to other ceo’s As President and CEO of the U.S. Fund for UNICEF, Caryl Stern earns $454,855.00. http://www.unicefusa.org/about/faq/ceo-salary-email

      Pay generally depends on the size of the organisation and obviously better pay attracts better talent. But this kind of pay is hardly uncommon. Hardly lining the pockets of corrupt millionaires as the article tries to make out. Its just common practice. What’s worse than that though about this article is that the writer has just stated “over 50% of all money made by ALS appeared to line the pockets of the millionaires running the charity and others working for it.” The writer contradicts themselves after by saying most of that 50% went towards “Grants and other assistance to governments and organizations in the United States”. So how much actually goes towards those running the charity is it 1% 10%, who knows. They have been bunched together to make it sound fantastical.

      Nor does the writer care to clarify what the purpose of these grants and assistance payments go towards, probably because it would damage their argument. Then the writer finds a weak link between money going to medical schools “with strong ties to the pharmaceutical industry.” at no point does it claim that any money goes direct from alsa to big pharma. There is no point to be made here of course medical schools are going to be linked to big pharma, they are medical schools after all. The writer again doesn’t clarify the purpose of the grants to medical schools is it because they carry out research and development for the charity is it out sourced work that cant be done by the charity itself. That seems reasonable to me if it were. Obviously again by expanding on these points would have damaged the writers article and they have chosen not to delve deeper to keep the reader ignorant.

      So basically after that part of the article I wasn’t really prepared to take this article seriously its way biased and misleading. Seems to me to just be very poor journalism based on weak links and misrepresentation of evidence. Or does the author care to back up these spurious arguments that damage the reputation of charity.

      • Thanks for commenting.

        Unfortunately you don’t seem to have read the post properly and you’ve also implied I haven’t properly explained my points to deliberately mislead the reader which is not at all what I was doing.

        I’m not a journalist, it clearly states on my blog I’m an “aspiring journalist”. That’s neither here nor there really but it does somewhat prove you haven’t paid a great deal of attention.

        Firstly, I don’t contradict myself. As you quoted in the first paragraph I wrote “the largest amount of what was left” in regards to money going to grants etc. That wasn’t included in the “over 50%” going towards salaries. Your views on how people are paid are your right to have therefore I accept them but mine simply differ. You say it’s just common practice and I understand that but it doesn’t mean I agree with it. I don’t believe people running charities should be on minimum wage but there should be a line – of course it’s difficult to say where you draw that line and I obviously don’t have that answer.

        Secondly, the only reason I didn’t go into more details about the grants other than briefly explaining they go to medical schools is because that simply led onto my next point. Next point being the charity hasn’t invested in the natural approaches I mentioned that have been proven to help sufferers. I didn’t suggest anywhere that the grants themselves were bad however I personally believe an amount should also be spent investigating and researching the aforementioned natural approaches a s well. I would agree that there isn’t anything wrong with outsourced work.

      • Ben

        I read the article I saw a piece of journalism hence I called you a journalist. My phone loaded the page with the headline at the top rather than your blurb which I would have to have scrolled up to see so no generally its difficult to pay attention to things that aren’t visible. Perhaps I’m too trusting of my friends when they recommend an article that it would be professionally written

        As for the other article you cited it clearly misleads the reader by grouping percentages together to create drama where there is none. $3.6 million for wages and salaries. $12.5 million on total labour (which is just over 50%) but no clarification on what that labour Is other than the $1.9 million in admin costs and the aforementioned $3.6 million for those employed by the charity directly. Obviously all that money isn’t going into lining peoples pockets and others that work for them as there is no proof offered that most of that 50% is. It could be a whole host of things such as emergency payments to carers of those with als, building maintenance any kind of website design etc etc, other essentials. Otherwise this is just a bunch of assumptions. There was also heavy insinuation of links between alsa and big pharma, but the only evidence is that of medical schools. That just doesn’t mean anything and tries to paint a picture of corruption. You’re giving a charity a bad name because you read something and then didn’t have the willingness to do your own primary research to back up these assertions, only links to other poorly written articles.

        You want to be a journalist that’s a good thing im glad you found something to be passionate about. But there are standards within journalism and yours will have to raise if you want to succeed. I would hope that you could take some criticism as it will help you to grow in the field.

    • Thanks for your feedback, I appreciate it! I’m pleased you found the points I made interesting. I think whether people agree or not, it’s great to be well-informed of both sides of a debate.

  3. Andy Brennan

    I stopped reading this “article” halfway through, partly because your grammar is terrible, and partly because the content is utter nonsense. Every single charity doesn’t receive the full amount, so why pick on one that has gone viral?

    Also, millions of people chuck water down their throats every day. The selfish bastards.

    • Thanks for your comment. I’m unsure why you put article in quote marks as I’ve never claimed it’s an article, it’s merely a blog post.

      I think by saying ‘why pick on one that has gone viral?’ you’ve actually answered your own question. Why wouldn’t I look into the charity that’s gone viral? You see it as me picking on it, whereas I see it as exploring a contentious and contemporary issue. That’s what blogging is all about.

      Being in a democracy entitles us to free speech and gives us the ability to hold power to account. I don’t think it’s fair that over half of the money they raised last year went to salaries, pensions, employee benefits, travel expenses and the like. But that’s just my opinion.

      As for the water issue, I found your point unnecessarily sarcastic. However I understand that opinions differ significantly on that particular aspect of this debate.

    • Tim Clark

      Ah Andy Brennan yes of course “grammar” which is usually picked up as an excuse – by the same people who are smart enough to disassociate meaning behind prose and the spelling of that prose – to ignore what can usually be a very intelligent piece of writing. In a world where approximately 10% of the adult population are believed to show some sign of dyslexia your “comment” if I can give you the level of intellect to call it that smacks of bigotry, elitism and frankly a snobbery which stinks. This is a good piece, the girl states that she is only an aspiring journalist but this looks to be better researched than most national commentators would write. it also fact checks well and doesn’t sensationalise. So next time you “can’t be bothered” to read something in full before making a prickish remark please do the world a favour and fuck off.

    • Andy, if you’re going to criticise the grammar of a fully comprehensive and well written blog post, make sure one of your three sentences doesn’t begin with the grammatically challenging: “Every single charity doesn’t receive the full amount”. Well done dick wad!

    • This was such an interesting watch, thank you for posting.

      I don’t for a second want to condone that the non-profit sector cannot market and advertise, take risks in order to generate more revenue and focus on other discriminatory areas that the the non-profit sector garners that this guy talks about. That would be purely hypocritical and the fact is charities should be just as able to do this as the profit sector since they seek to help the needy.

      However my issues with the ALSA do not purely stem from where their money is going. I completely accept not all money can go to research and actually helping the victims and they have to go to other areas such as advertising and fundraising but I just can’t agree with over 50% on salaries, employee benefits, pensions etc. Maybe you could say – well we should just donate more because then there will be more money to the cause regardless of the . But it shouldn’t be over 50% to begin with.

      The guy said “who cares what the overhead is if these problems are actually getting solved?” Very true and something I agree with, but that’s just the point. This problem is not getting solved. 30 years of animal testing that has not worked and yet no other method is being used, nor are they funding research into natural approaches that have proven to help victims and so on.

      My stance on the issue and my decision not to take the challenge is not me disputing that raising awareness is amazing or denying that the challenge has been a good thing. It is me disputing the actions of the ALSA.

  4. Hi Olivia,
    You and I are like-minded on this. I have used some similar stats and comparisons in my own blog post – here is the link if you will permit me:

    http://davidnobleblog.wordpress.com/2014/08/26/the-spaghetti-challenge/

    The expenditure figures you cite are astounding, but a timely reminder that we should check out how charities spend the money we donate.

    Hopefully with more articles like yours being blogged and reproduced elsewhere some sense of proportion will be restored soon!

    Congrats on a great blog by the way!

    • Thanks for the comment David. I enjoyed your post and would definitely agree we are like-minded!

      I know that the water issue you focused on in your blog is particularly controversial mainly because many people argue that we waste it anyway. But in my mind that’s just saying who cares let’s just waste more. At the same time I also understand that it’s not like we can just send water over to them. I think for me it’s more an ethical issue. Whilst me throwing water on my head is not going to make a difference either way, it just doesn’t sit well with me when I know full well how many millions of people can’t have clean water.

      Thank you, you too! I look forward to reading other posts from you.

  5. chris

    I’m sorry but all this complaining about people doing this good deed is ridiculous. People like you like to think they are “too cool or alternative” to do something like this or just want to be different by not doing it and self publicise the fact they aren’t doing it. Can you not see the bigger picture that awareness of this previously little known about disease has gone up hugely, which is a really important thing. Suggesting things like heart disease only gets so and so amount of money means nothing. Heart disease is mainly caused by personal choices (diet, lack of exercise, smoking, drinking etc.) and therefore does not deserve as much financial backing. People are all too ready to turn to the doctors when they have treated their bodies like crap (fat people getting gastric bands paid for by taxpayers as an example). Yes, financially, maybe this organisation needs to be looked into in more detail but you’ve not overly convinced me that they are doing anything wrong. BUT at the same time I can’t believe the comments along the lines of the “drug companies and all their money making schemes”. The drug companies are businesses (businesses try to make money fyi). They plough millions into researching drugs, so why can’t they charge for these drugs once they are available and therefore make a profit?! Oh and the other comments above about wasting water when Africans need it is like saying “oh I shouldn’t throw away the left-overs from dinner because someone in Africa is starving”. Get your heads out of your arses!

    • Thanks for the comment, it’s interesting reading other peoples takes on the matter.

      I just wanted to point that I don’t think I’m too cool or alternative to do it, nor do I want to seem different.

      I’d simply heard what I thought were pretty disturbing facts about the charity and rather than spout some misguided stuff to people I decided to actually research it and write an informed piece.

      I definitely agree with you that raising awareness is an important thing. I mentioned this at the beginning of the post and clarified it’s the actual charity I have a problem with. But what is that awareness good for if the charities continue to do the victims a disservice by continually spending all the donations that said awareness brings on animal testing (that isn’t working) and salaries?

      Of course drugs companies are businesses and have to make a profit and it’s fair if they invest a lot of money into research but I believe they have cures (or at least potential cures) to certain diseases which they won’t release because they then won’t make as much money. But that’s a whole other issue.

      • Ana

        It’s good to express you opinion Olivia. As you said, it’s about free speech.

        But I try to refrain on expressing my opinion when I don’t know enough on the subject. As a clinical researcher for the past decade or so, I am often put off by comments such as “worthlessly subjecting animals to suffering” – it is isn’t something that scientists enjoy doing – but until we have better solutions for researching human diseases (maybe using rapists, murderers in jails?), developing as-close-to-the-human pathology-as-possible animal models is what is available….simply saying more “human-based technologies” is not enough, when one would be hard-pressed to find ones that could mimic the complex interactions of a living body.

        In addition, for the points you presented, you sourced often one source… One could write a blog advocating the opposite to you and find sources that would support it as well… One must make sure to look at more than the opinion of one neurologist for instance.

      • Ana, thanks for your comment. You’ve made a good point.

        I hope you can appreciate that because animal testing is so controversial, there is always going to be hundreds of thousands of people expressing an opinion merely on the grounds that it hurts the animals without knowing enough about the subject. But I don’t want you to think I am one of those people, because I have made an effort to research the issue. I know that many medical breakthroughs have been as a result of testing on animals, such as the discovery of insulin, the polio vaccination and so on. I also understand it has actually helped some animals in terms of curing them of diseases. It is a difficult issue for me because on the one hand I do agree with what it has done so far, whilst on the other it depresses me that animals have had to go through that pain.

        I respect what you’re saying entirely in that there may not be other viable alternatives and I certainly didn’t want to imply that I think scientists enjoy the work. But you probably understand that it’s difficult to accept that animals are still being used when the public are aware of alternative methods like in vitro, stem cell and genetic testing and microdosing. I would genuinely be interested on your take on this as I’m sure it would be very eye-opening.

        I did try to find information on other ways that the animal testing may have helped or whether they are any closer on creating the right model but I haven’t been able to find anything as of yet (which of course is not to say it doesn’t exist). All the evidence I could find pointed towards the animal testing currently being used by the ALSA to be ineffective.

    • James

      This is touché chris. Saved me the effort of having to write it out myself. Would also like to point out to this journalist that the challenge supposedly never even started as a funraiser for ALS/MND, and that you could of donated to any charity that you didn’t deem so ‘corrupt’.

      • You’re right in a way. It started in America – people would pour water over themselves and film it. Some did it just did it for fun but some nominated 3 other people to either tip water on their head or donate $100 to the charity of their choice.

        It became a fundraiser for ALS when a former baseball player who has the disease did the challenge on June 29th. Obviously others took notice and started doing the challenge solely for ALS.

        I already donate to other charities but that’s a good idea for others if they have a charity that is closer to their heart.

  6. Tee

    I agree with a lot of what you are saying. A lot of people do this just for getting “likes” on Facebook etc but have no idea what its for and therefore raise zero awarness. However, about your comment:
    “Not only that, this year 3.4 million people will die from a water related disease and 780 million people do not have access to clean water. And yet thousands of us have chucked this precious resource over our heads?”

    I am from an African country (the stereotypical place for such problems) and can tell you first hand that whether you chuck a bucket of water over your head or save the water for later wont help people who die from water related diseases or those do not have access to clean water. Rather save water just for the fact that wasting resources, natural or otherwise, isn’t the thing to do.

    Also, don’t fully agree with the animal testing part (im a doing my PhD in a scientific degree and have seen the importance of animal models) but its your blog and its a valid opinion 🙂

    • I agree with you there!

      Yeah I definitely see your point and I understand. Perhaps I should have worded the part about water differently, I know my decision to not do the challenge isn’t going to make a damn sight of difference to those without water. It’s more of an ethical thing for me, whereby it would just make me feel bad to do it when I know full well how many people have to suffer without clean water. But I try to conserve water anyway, which again may be futile since it’s not like I can send the water I don’t use to other countries. The best I can do is donate to WaterAid so hopefully I make some small difference!

      Thanks, it’s good to get a different perspective from someone who knows their science! My post was already so long so I guess I didn’t want to bog it down with too much information but I certainly wouldn’t disagree that animal testing has helped in the past and established a path to many cures, even though the suffering of the animals does still upset me. But I believe in this modern age there must be so many better and more effective ways to research. It’s more the way in which animal testing is being used by ALSA in particular that has riled me, considering the evidence to suggest that it’s simply not working.

  7. Michelle

    I have done the ice bucket challenge but did not donate to the above named charity. In my status I declared I would be nominating to a charity of my choice which was the make a wish foundation. I took part to spread awareness of my preferred charity. If you don’t like the charity for whatever reasons, change the charity and spread awareness for one that is good for you.

    • That is a really good idea Michelle. I wouldn’t do the water part but I could definitely write on Facebook about the charities that are close to my heart or do something else to spread awareness of them. They’re quite personal to me so it is a little daunting thinking about being so open about it!

  8. Personally, I disagree. You raise some great points about charity percentages, however this is the norm for the majorities of charities. I’d also rather line the pockets of people who dedicate their lives to a fantastic cause than line the pockets of McDonalds with my self earned cash this week by donating to this cause.

    Whilst I don’t agree with the animal testing, there are other avenues to donate to for ALS/MND which avoid this subject for the people who, like you and I, don’t want animals to be used as test subjects. Donating to hospices, for example, who care for these poor folk, who through no fault of their own have this disease.

    I will be partaking in the Ice Bucket Challenge, and risk the wrath of people who hate jumping on bandwagons. I won’t shower the day I do, so I wouldn’t be wasting any extra water that I wouldn’t have used anyway.

    I nominate you to open you heart up a little bit more to be honest. Maybe instead of writing a disheartening article and focusing on the negatives, write an article suggesting other ways people can still help out a very worthy cause whilst illustrate your opinions and points.

    That is all.
    Cheers

    • Thanks for your comment Rosie.

      I can’t find information on the hospices you’re referring to. I’ve looked some up online and they’re all linked to the MNDA and obviously as stated I disagree with the animal testing. Do you have a link? I’ll keep looking because I think that’s a great idea and something I would definitely add into the blog.

      You lost me a little with your last comment about opening up my heart. Just because I disagree with the way a particular charity conducts their business doesn’t mean I’m heartless. I give to other charities and I have expressly stated in the article that my qualms with the charity are due to the fact that I believe they are doing a disservice to the sufferers, which does upset me. I have a close friend who’s uncle died from the disease so I do understand and sympathise with how it affects families and of course the person inflicted.

      • My apologies, I withdraw my last comment, it was thoughtless. Posts like this tend to have an overall disheartening feel to something which is so, so positive overall. I’d love to see some more options included and positives focused on. Thanks

  9. Toby Nash

    I find myself agreeing with the article’s author on some of the points he/she makes: namely the suggestion that there are other, perhaps more “desperate”, charities which require serious funding and that tipping water over one’s head may be insensitive considering the water shortage in certain areas of the globe. However, as a young chemist embarking on a PhD in collaboration with a pharmaceutical company, I feel I should offer a defense to some of the uninformed statements on the scientific method made in this article. I would also like to challenge your comments on the financial model of charities, which isn’t just specific to ALS.

    The financial model:

    “over 50% of all money made by ALS appeared to line the pockets of the millionaires running the charity and others working for it” – people can’t be expected to work for free. Although having a charity full of volunteers would be ideal, this isn’t plausible in the real world. People have family’s to feed.

    “The CEO alone made well over $300 000 dollars last year.” – to attract the best employees, company’s must offer incentives to these specialists, otherwise they will go to other companies (most likely profit based companies). Like it or not, that is how capitalism and the free-market operates. Also, somewhat ironically, this CEO will have been key in employing this craze and promoting it to international audience. Does this prove that he/she is worth the salary they earn?

    “The largest amount of what was left went towards “Grants and other assistance to governments and organizations in the United States”…“Almost all of these recipients are medical schools, with strong ties to the pharmaceutical industry.” ” – I find this statement somewhat confusing. ALS won’t be working on their own to try to cure this illness. They will be collaborating with pharmaceutical companies to do this and will be funding PhD students and academics at medical schools to achieve this as well. Surely this statement is a positive???

    The scientific method:

    While I don’t know the “ins and outs” of this charity’s research methods, there seems to be an underlying tone to this article which suggests some sort of mass conspiracy by pharmaceutical companies. If there were viable alternatives to drugs on the market, we would certainly know about it. Scientists can’t stop talking about their work and discoveries and if they discover something important, they won’t hide it. On a more specific note, if there are “500 studies into natural approaches to ALS”, then who is funding these studies if it is not pharmaceutical companies/independent research councils and why have none of the many small pharmaceutical companies that start up every year exploited the results of these studies?

    According to this article, the success of animal testing for ALS is extremely limited. I haven’t looked into this deeply enough, so I am not in a position to argue this. However, I can state the trials which drugs must go through prior to being marketed. Currently, drugs tend to be computationally screened, then tested on cultures of bacteria/the virus, the animal testing, then human clinical trials. Skipping straight from testing in vivo to human trials could have terrifying results. Currently animal testing is the intermediate – what would you suggest replace this? Because if there was a general method that was better than this for the majority of occasions, it would be used.

    Sorry for some of the sloppy writing/clarity. I had a lot to write and I’ve had a long day!

  10. Thank you for writing this. You’ve displayed everything I feel about this subject in one blog post!
    I also feel that a lot of it has become so much of a bandwagon, and that a lot of people I’ve seen also probably know nothing about the cause. I feel it’s also become almost a competition amongst people, battling it out to see who can stand to have the most I’ve water poured over them, who can make the best/most creative video etc. for their own gain as opposed to seeing the main point if doing it.
    I’m also severely against animal testing, and so I don’t feel that I can support a charity that condones this kind of thing.
    Once again, thanks for this. I’m so glad someone has said it.

  11. Ben

    Superbly and calmly argued blog post, thanks Olivia. Like others, I have been feeling somewhat easy about this ‘challenge’, and I like the way you have batted away the abusive comments!

    I too won’t be doing this stunt as I already donate a small amount regularly to The MS Trust http://www.mstrust.org.uk . As a person with M.S. myself, I know that they need all the help they can get (sadly, who doesn’t these days?)

    • Thank you for the feedback Ben I appreciate it. I’m so sorry to hear about your illness, it’s great you make the effort to help the cause. I see on the website link you posted that there’s some new treatments being developed, I really hope they come to fruition!

  12. Ben

    Invariably this story keeps splitting and splitting into more or less relevant areas, but the wasting of water as a resource is so far off the point as to not warrant inclusion. Africa actually constitutes 20% of the earth’s land surface and yet has 29% of the worlds fresh water, so the characterisation of ‘dry Africa’ is hugely problematic and as an aspiring journalist you must learn to be more perceptive and nuanced about this. The problem is mainly geographical distribution of water but donating money or reducing wastage of water in the UK cannot change that. Canada alone has 7% of fresh water and yet only 0.005% of the world’s population. They can ‘waste’ as much as they like and will never be shirt of water. However you seem to suggest that a developed place like that should somehow be guilty for its water resources when in fact nothing about water usage in one country, North America or European, can make a blind bit of difference as to the problems of water shortages in the parts of the world (not just Africa) that they occur. Finally, drought is a balance between the needs of an area and the availability of water. So we can just as well suffer drought in the UK when the requirements for farm and household use are not met. Likewise most of the parts of Africa that are arid have very low population density, and places with good availability of water support more farming and people, simple. It’s not a continent of people scratching around in the dust. Mali, Southern edge of the Sahara, in the ‘African narrative’ it must be a desert, yet its capital gets about four times as much rainfall as London. I can see why some people are frustrated at this particular diversion from the issue by focusing on water use – a total irrelevance.

    • Thanks for your comment, it’s a very eye-opening description of what is actually happening with water resources.

      I’m not sure what you mean regarding the characterisation of ‘dry Africa’ in relation to my post as I never actually mentioned Africa specifically although someone in the comments did. I agree with what you’re saying that reducing wastage of water in countries like ours is not going to actually help those without water. I didn’t mean to make people feel guilty for doing the challenge, I’m just reflecting my opinion that I personally would feel guilty. It’s something that doesn’t sit well with me and just upsets me that we’re able to do that whilst others don’t even have any to drink or wash. But that’s just me and I get why other peoples opinions differ.

      • Ben

        I started out by mentioning the fractious nature of the story intentionally – indeed my net focused on one of these branches, and your concern wasn’t in the main with water use, it just happens to be an area of professional interest for me which is why I ran with it. Apologies for tying you into to the Africa comments in the threads above, water shortages and Africa do often get conflated. I do stand by the idea that as a journalist you need to be careful not to make simplistic or sweeping statements that lose resolution on an issue though. I had read some of the articles you linked already and think overall what you wrote is a great synopsis. I am in total agreement with the problems the challenge has created, issues around the ALS charity, proportionality and the fundamentally crappy fundraising model that says ‘do this OR you’ll have to pay 100 of whatever currency’, it just encourages the video habit and not donations. I just wanted to say that the argument would not be diminished by not including the spurious water bit.

      • That’s OK, I understand it must be somewhat frustrating for someone who is knowledgeable on the issue to be faced with ignorance and the very common presumption that the majority of Africa is affected by a water shortage whilst not mentioning other countries affected. In speculating why this is, I can’t help but wonder whether it’s the way in which the involved charities advertise. But obviously that’s a different debate! Good point you’ve made about sweeping statements, I will definitely take that on board. Can’t fault a bit of constructive criticism! Glad to hear you agreed with some of the other views.

  13. Hayley D

    Can I just say people are commenting on the fact people have ‘jumped on the bandwagon’, the only reason people are doing it is because they have been ‘nominated’, it’s an ingenious idea… plus i’m sure most businesses with lots of money going through them attract swindlers, it’s the way of the world. sad but true.
    Great blog & comments!

  14. I have read all of the comments on this blog so far, and it is clear there any many differing opinions.
    I add a few additional thoughts here, and apologies to Olivia for the length of it!

    1.The ethics of using fresh, clean water is not irrelevant. The point is that wasting a resource that is plentiful in one community, and relatively scarce in another is itself creating a moral dilemma. WaterAid.org provide this helpful advice:

    “Worried about the water? You can make sure you don’t waste a drop by taking on the challenge in your garden (giving the plants a good watering as you go), in your local lido or swimming pool, or even in your pond…”

    A further point on using cold water/ice, that seems to have been lost, is that some of the symptoms of ALS/MND are suggested by some to be mimicked by being immersed in cold water.

    2. The morality of paying charity executives six figure sums is highly relevant. The argument that you have to pay the market rate to get the talent is nonsense – if every charity paid the market rate for every level of employee their staff overheads would be astronomical. Working in what is often called the “third sector” carries its own rewards and downsides. The reward – making a positive difference to a good cause, the downside – not earning as much as you might elsewhere – it’s a choice and a choice that many talented charity based CEO’s have made.

    3. Animal testing. This is a separate ethical discussion and not isolated to ALS. Can we ever replace animal testing? – that is as yet unknown, although much work is being done on developing disease models not based on animals. One commenter suggests using rapists, murderers etc.. to test drugs on – seriously?! That goes completely against the declaration of Helsinki, which was drafted to provide clear, and strict, guidance to researchers on how their drugs can be tested in human beings. Until we have reliable methods of testing the safety of a drug without using animals, then animal testing is a fact of life in pharmaceutical research. As one commenter states, no researcher takes the use of animal models lightly, there are strict rules (in the UK you must have a Home Office license to perform experiments on animals), and the pharmaceutical regulatory agencies – FDA, EMA and others – insist upon preclinical data for a new drug that can only be provided through animal dose testing for safety purposes before being tested in human volunteers.

    4. As with all issues, we all have a view, and it would be a ridiculous situation if we all held the same opinion. Diversity of opinion is important to develop balanced arguments and help with informed decisions. Opinions well researched and based in fact (as in this blog) are best placed to generate more productive discussion. Taking polarised views, and making them personal, is not helpful in developing a dialogue and meaningful discussion.

    5. Are we getting away from the whole point of the “ice bucket challenge”? Well I guess the answer is yes and no. The challenge has raised awareness for sure – good thing. It has raised more funds for research – good thing. It has made people look more closely at the tactics this campaign has employed, the positives and negatives, and has raised other issues e.g. responsible use of water – good thing? You decide. The challenge has been taken on by other charities too – good thing? You decide that too.

  15. All I can read in the blog is negativity, and honestly until you come face to face with MND you will never fully understand. I agree the money donated could be better spent- but why disregard the charitable act ? I’m sure you yourself take showers, could you not consider Africa then? What is so wrong is pouring water over your head and puting your money into something which is completely selfless. Why have a negative spin on it ? I hope this post doesn’t change to many peoples opionions, cause if all people were like you it would be an EXTREMLY selfish place.

  16. Most charities I refuse to donate to unless at least 85% of the funds go directly to the cause and I KNOW is legit.

    All that good water wasted when children elsewhere have no access to clean water. Sickening indeed!

    And how many just jumped onto the bandwagon simply bc it was “fun” or “trending”, without really donating to charity? To cash in on it because they are narcissistic, wanted their 15 seconds of fame?

    I can only support so many charities working minimum wage. I prefer HIV and GLBT-related causes. I hate when all these yuppies and hipsters try to guilt me when I can’t.

  17. Peter

    Having watched the mother of my children die from MND, I can only say this article is crap written by someone who has no idea what she’s talking about and who has drawn on articles she’s read to write this piece of garbage. The fact she says herself she is a 22 year old aspiring journalist should make you wary, the fact she’s used information from other sources and cut and pasted it in to her article, I refer here to the salary of CEO’s which has been widely spread around the internet in recent years, means it’s not even an original piece of work. She’s taken other peoples data and articles and called it her work and fitted it around something topical, is pure opportunism. I and many friends have taken or will take the challenge, MND Association has benefitted by over £3 million and that will be put to good use. Many famous people have taken the challenge including Stephen Hawking who was too ill to do it but his family did it for him… who do you believe some opportunistic wannbe 22 year aspiring journalist, or one of the leading scientists of our generation (who has MND)? Olivia Eaton knows NOTHING, she’s trying to make a cheap easy name for herself, shame on you who re-post this utter crap! Sorry, I don’t usually let myself rant like this, but this article sickened me. All Olivia Eaton has done is prove she is ready for a journalistic role for the Sunday Sport or the Sun, where her ability to steal other peoples work, use it to discredit a very worthy cause then call it her own work, should stand her in good stead!

    • Thanks for the comment Peter, I’m so sorry to hear about the passing of your wife.

      I’m not ignorant to the suffering of those with the disease and their families as I have a close friend who’s uncle died from the disease who chose not to do the ice bucket challenge and agrees with this blog. At the end of the day, everyone’s opinion is different.

      Unfortunately, you’ve completely misunderstood what a personal blog is. I’m not a reporter, nor a journalist. This is not written on a news website. It is used merely to reflect on my opinions which are in turn backed up with my own research hence linking to articles and backing up my opinions with some evidence. It’s very misguided to continually suggest I’ve passed off others work as my own. This is obviously not the case because I have linked in the sources I’ve used. When you write an essay and quote a book and include that book in your bibliography, is that passing their work off as your own? Think about it.

      I couldn’t very well just write “I don’t like the Ice Bucket Challenge because they test on animals and they don’t get enough of the donation and the symbolism of wasting water is bad.” I have backed up my views on this with research and this is the correct way to structure an opinion piece.

      In addition, I am not trying to make “a cheap, easy name for myself”. I am just a girl writing my opinions. Not in a million years did I imagine that it would be shared so many thousands of times.

      The view point expressed in this article has been mirrored in many other different pieces of writing and that is the way of the world. Opinions differ.

      • Peter

        I respect your opinion Olivia, but I completely disagree with it as you will have noticed.
        You have re-hashed some old stuff from previous articles, and I think you’re mixing apples and pears.
        I have great sympathy for anyone in the world who’s suffering, I worked for a while in India and saw the poverty. Sadly we can’t ‘fix’ everything, I sometimes think we intervene too much, why is it our responsibility if people in Africa live too far from water, why can’t we deal with our problems first, the poverty in our country, illnesses we cannot cure?
        Sorry I do think you jumped on a bandwagon that was rolling and spoke out against it which was obviously going to get you noticed! This is not meant to be personal, we clearly share different opinions and we are both entitled to express them. I’m glad so much money has gone to help The MND Association seek a cure for this illness, I hope Africa gets water, they cure Eboloa, cancer and all wars end! Then the world be a better place for many people.

  18. Thank you Olivia for the efforts you’ve put in this and your open-mindedness, I’m sharing this! It’s our collective human responsibility to act based on knowledge.

  19. Chantelle

    Lots of heat on this page, it seems. But, we are all entitled to our opinion I guess…

    All I want to say Olivia is “GREAT ARTICLE”. Well done. Lots of facts and links, well-researched and most of all, topical!

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