Ship of Fools: Yes, ALS is a terrible disease but...

Thread: Yes, ALS is a terrible disease but... Board: Oblivion / Ship of Fools.

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Posted by Anglican_Brat (# 12349) on :

By now, I assume many of you have heard of the Ice Bucket Challenge designed to raise money for ALS:

http://en.wikipedia.org/wiki/Ice_Bucket_Challenge

While ALS is a terrible disease, I wonder how rare or common it is. From my limited knowledge, my understanding is that ALS is relatively rare compared to cancer and dementia. Right now, Ebola is an increasing threat in West Africa.

Does the level of frequency of the disease affect how much we fund it? If I get ALS, I imagine I would want every available dollar to go to finding me a treatment or a cure. That might be an understandable feeling but is it really realistic seeing that there are many diseases in the world?

Posted by lilBuddha (# 14333) on :

Ebola happens in Africa and doesn't have celebrities attached.
But really, there are many more diseases more devastating than Ebola. And the prevention/reduction of quite a few requires no pharmaceutical breakthrough.

Posted by LeRoc (# 3216) on :

I have to give it to them: it's a hell of a campaign.

Posted by Palimpsest (# 16772) on :

I'm not a fan of fundraising challenges including walks, dances and this. I have helped organize some aids walks and the counter argument is that they do work to both raise money and awareness.

I think the flaw in your "it's not important enough" is that it assumes there is a rational central budget which is allocated for medical needs. These activities are usually in addition to what the government has budgeted. For many people the money they give to these events comes from their socializing and entertainment budget rather than their charitable funding. We may give more when we personalize the charitable appeal. I think it's practical to say that central planning is never going to cover specific cases and one way to handle this is to have everyone pick a few personal charities that they support in addition to the massive organized ones. That used the fact that people have different priorities to fill gaps. The central government funding is biased toward the diseases that elderly white men get since that's who controls funding.

Why limit the prioritization to medical work. How can you fund a new church building, a symphony orchestra, a public park when there are people who need food and people dying of Ebola in Africa? This is part of the larger ethical dilemma of how do you justify inequality in the world?

Finally, I've noted that the people who give money for such fund raises also seem to be in the habit of giving money to other charities. It's the people who complain that the charity isn't the best use of charitable funds who turn out not to contribute to any charity.

Posted by RuthW (# 13) on :

quote:
Originally posted by Anglican_Brat:
While ALS is a terrible disease, I wonder how rare or common it is. From my limited knowledge, my understanding is that ALS is relatively rare compared to cancer and dementia. Right now, Ebola is an increasing threat in West Africa.

ALS on Wikipedia:

quote:
ALS is classified as a rare disease but is the most common motor neuron disease. People of all races and ethnic backgrounds are affected. One or two out of 100,000 people develop ALS each year. Amyotrophic lateral sclerosis affects approximately 30,000 Americans. ALS cases are estimated at 1.2–4.0 per 100,000 individuals in Caucasian populations with a lower rate in other ethnic populations.

So there are a hell of a lot more people with ALS than people who have contracted Ebola. Comparing ALS with cancer and dementia makes no sense, either. ALS is a specific motor neuron disease, while cancer is a family of diseases -- there are over 100 different kinds of cancer -- and dementia is a broad category of neurocognitive disorders. (All this info is on Wikipedia.)

quote:
Originally posted by Palimpsest:
I'm not a fan of fundraising challenges including walks, dances and this. I have helped organize some aids walks and the counter argument is that they do work to both raise money and awareness.

Yes, that's the argument, and it used to make sense. At this point I don't think breast cancer and AIDS need the general kind of awareness that these kinds of events can raise. However, the Wikipedia article on the ice bucket challenge says that before the fad started, only half of all Americans had even heard of ALS.

quote:
I think the flaw in your "it's not important enough" is that it assumes there is a rational central budget which is allocated for medical needs. These activities are usually in addition to what the government has budgeted. For many people the money they give to these events comes from their socializing and entertainment budget rather than their charitable funding. We may give more when we personalize the charitable appeal. I think it's practical to say that central planning is never going to cover specific cases and one way to handle this is to have everyone pick a few personal charities that they support in addition to the massive organized ones. That used the fact that people have different priorities to fill gaps. The central government funding is biased toward the diseases that elderly white men get since that's who controls funding.

A lot more medical research funding comes from corporations than from governments, and that is of course profit-driven. The Onion had a great headline the other day: "Experts: Ebola Vaccine at Least 50 White People Away."

quote:
Why limit the prioritization to medical work. How can you fund a new church building, a symphony orchestra, a public park when there are people who need food and people dying of Ebola in Africa? This is part of the larger ethical dilemma of how do you justify inequality in the world?

I'd say it's more the many ethical dilemmas of what we do given the inequality that already exists.

Posted by Bullfrog. (# 11014) on :

I wonder why they don't call it Lou Gehrig's Disease anymore.

I do remember being vaguely aware of that one at some points in life, but ALS is new to me.

I had a friend who died of breast cancer; she hated the pink ribbon crap with a passion. Given the cuts to funding for science in this country, I am not comfortable with the emphasis on these large scale fundraising drives, but I have to respect the way that it's executed (not much marketing overhead that I'm aware of) and the good that it can do.

Pitting poor causes against poor causes may be realistic; it's also cruel. You could take that line of reasoning to undercut any charitable effort.

Disclaimer: I have one friend from seminary who suffers from ALS.

Posted by Jemima the 9th (# 15106) on :

There's a Benedict Cumberbatch challenge on youtube, and for that reason alone, I love it. [Biased]

More seriously, cancer charity fundraising is a big deal locally. We have Race for Life which is a huge event. Currently every bus stop in my village sports a Cancer Research Uk advert. I have issues with CRUk advertising, I think their wording can be naff. "I love tomorrows so I give to CRUk". With 1 in 3 people going to get cancer, 1 in 9 women going to get breast cancer, I think awareness is pretty good these days, so awareness raising seems a bit odd.

People aren't so well aware of ALS and rarer illnesses. As said ^^ it's one hell of an idea from the ALS people, so full marks to them. It's really taken off, and who knows when they'll get another opportunity as good? ALS wouldn't be on the radar for eg a school coffee morning, which is much more likely to give funds to CRUk or Macmillan.

As for Ebola, there isn't a single "help Ebola sufferers" type charity, but people could give to MSF - maybe their revenue has gone up recently?

Posted by Twilight (# 2832) on :

Another reason you can't really compare this ALS drive with cancer is that we have two huge cancer drives every. single. year. This seems to be a one off for ALS. Polio was fairly rare when FDR started the March of Dimes to find a cure and all that money over one short period did the trick.

I'm still waiting for the big Cure Schizophrenia drive. It effects one in a hundred and attacks people in their early twenties rather than at the end of life. It is the number one financial drain on disability social security and it has crowded our prisons. A cure would benefit everyone.

Posted by no prophet (# 15560) on :

We never used to have all of these fundraising things. Now we do. Why?

Posted by Horseman Bree (# 5290) on :

Easier mass communication, esp. video, makes these things go viral quickly across a continent or the world.

Plus there are a lot of people who are rather bored with doing "the same old", and who can be talked into doing something a wee bit different. They are the ones to catch, because, if they like it, they may do it again - hence "Run for the Cure" or Dragon Boat Races, which run every year.

Social interaction always helps. once you've got the attention - that's why churches used to be the place where this sort of thing started.

But who needs church, when it is bound up on "serious issues" like "which identifiable group do we despise next?"

Posted by John Holding (# 158) on :

quote:
Originally posted by Bullfrog.:
I wonder why they don't call it Lou Gehrig's Disease anymore.

At a guess because the whole world outside Canada and the US calls it ALS, since only in Canada and the US was Lou Gehrig a public figure -- and that was a fair long time ago. I'd speculate that these days the only thing people know about Lou Gehrig -- if they know anything at all -- is that he had a disease named for him.

John

Posted by Bullfrog. (# 11014) on :

I knew he was a great baseball player, in addition to dying of a nasty disease, but that was because I used to be a baseball geek.

It also looks like the title "ALS" predates Gehrig's coming down with it.

Posted by Anglican_Brat (# 12349) on :

quote:
So there are a hell of a lot more people with ALS than people who have contracted Ebola. Comparing ALS with cancer and dementia makes no sense, either. ALS is a specific motor neuron disease, while cancer is a family of diseases -- there are over 100 different kinds of cancer -- and dementia is a broad category of neurocognitive disorders. (All this info is on Wikipedia.)

Thank you Ruth, I haven't thought of it that way.

Posted by Dave W. (# 8765) on :

Still, ALS is quite rare even when compared to a single type of cancer; according to the National Cancer Institute, there are nearly 3 million women with breast cancer in the US, or about 100 times the number of people with ALS.

Of the 12 types of cancer listed in the left side of that page, only one (pancreatic cancer) is as rare as ALS; all the others are about 10 to 100 times as prevalent.

Posted by cliffdweller (# 13338) on :

Which is why they need a big, attention-giving fund-raising campaign. Everyone knows someone-- usually several someones-- with cancer. The need is obvious, and, as has been noted, for that reason cancer fund-raisers are ubiquitous. Not so with rarer diseases.

Posted by bib (# 13074) on :

In Australia it is known as Motor Neurone Disease (MND). Having worked with patients with MND I can assure you that it is one of the most horrible illnesses you can contract. Whereas I normally would not support euthanasia, for MND I make an exception. I am disgusted by the current 'bucket' challenge as I feel it trivialises the disease and all it does it publicise high profile people showing off. They could give money quietly without making a public spectacle. I implore people to contribute to research into MND but not to be involved in silly childish games. I have heard that many people participating in the challenge haven't even bothered to put their hands in their pockets. Shame!

Posted by opaWim (# 11137) on :

I strongly agree with bib.
In recent years two of the volunteers at the retreat centre where my wife works, suffered and died from ALS. So it's not as if I am unaware of how terrible an affliction it is.
There are lots of ways celebrities can generate publicity for themselves without utilizing (the sufferers of) a horrible disease.
I also dislike the usual moral blackmail / social pressure aspects of campaigns like this. Whenever the causes my wife and I donate money to start utilizing methods like this, they lose us, immediately and irrevocably.

[ 24. August 2014, 09:06: Message edited by: opaWim ]

Posted by Moo (# 107) on :

quote:
Originally posted by Ruth W
So there are a hell of a lot more people with ALS than people who have contracted Ebola.

Yes, but ALS is not contagious. A massive Ebola epidemic has the potential to kill millions of people.

Moo

Posted by Dafyd (# 5549) on :

quote:
Originally posted by Moo:
A massive Ebola epidemic has the potential to kill millions of people.

Not as things stand. At the moment, ebola has linear transmission. That is, every case infects about one additional person. That's likely to remain the case as long as it's transmitted by bodily fluids. That means efforts to contain it are going to be successful eventually, and it will probably die out on its own. To really become a massive epidemic a disease has to transmit through the air or water or through parasites.

Posted by Moo (# 107) on :

AIUI at present there is a serious shortage of sterile gloves, which should be discarded after each patient has been treated. Some new cases, mostly among medical personnel, develop because of this lack.

Moo

Posted by Cathscats (# 17827) on :

Amongst the Facebook teens I know the challenge is being used to donate to Cancer research, not ALS or MND. I guess they have heard of cancer...

Posted by ToujoursDan (# 10578) on :

From what I understand from listening to the BBC's and Voice of America's Africa service, Ebola can only be spread through touching a person (dead or alive) who has the disease and then touching your own mouth or eyes or an open wound. Outbreaks often crop up in Central Africa (DRC, Rep of Congo, Gabon, Cameroon, Equatorial Guinea) but tend to burn themselves out quickly.

Why it is spreading in west Africa (Guinea, Sierra Leone, Liberia and to a lesser extent Nigeria) seems to be:

1) A deeply rooted local cultural tradition whereby the corpse of a dead person is handled and prepared by the whole community for burial as of way of acknowledging the loss as a group. Ebola can stay active after death.

2) Widespread local suspicions of "white"/western medicine that stretches back to colonial domination. This had often led family members to abduct Ebola patients from hospitals and quarantine centres, returning them to their own villages where they infect others. This also leads many to seek protection from the virus using traditional medicine instead of observing the established protective guidelines, some have turned to traditional medicine for treatment as well. In Nigeria, about a dozen people have died by drinking large amounts of salt water believing that will protect them from the virus.

3) Government policies that quarantine whole districts which has shut down commerce. To get food and other supplies into these districts, people are finding their way around checkpoints. Infected people are escaping detection.

4) As Moo said, inadequate supplies and disinfection procedures at hospitals.

All that said, most believe that this Ebola outbreak will burn itself out in a few months. I don't believe that ALS and Ebola can be compared. Ebola does have a 60% fatality rate for those who catch it, but it is a very small number of people and these outbreaks happen very infrequently.

[ 24. August 2014, 14:47: Message edited by: ToujoursDan ]

Posted by Pyx_e (# 57) on :

The whole ice bucket thing is a bit of a laugh. I see no sign that people are giving less to one area in order to give to the ALS cause. It has certainly raised the profile of ALS research.

It is getting to the point where WHATEVER someone does someone will disagree with it / troll it / offer an alternative (funnily often something they are concerned about). Sigh.

Posted by Chorister (# 473) on :

Although it would be wonderful to think that everyone would give to all charities without an incentive, there are many who will only give if an idea is zany enough to capture their imagination. Doubtless, when the ice bucket gimmick becomes old hat, along will come another crazy idea to support another charity, and the social media bandwagon will chase it to an equal extent. And another generation will have a shedload of fun while raising money for a good cause.

Remember baths of baked beans?

Posted by RuthW (# 13) on :

quote:
Originally posted by Dave W.:
Still, ALS is quite rare even when compared to a single type of cancer; according to the National Cancer Institute, there are nearly 3 million women with breast cancer in the US, or about 100 times the number of people with ALS.

Of the 12 types of cancer listed in the left side of that page, only one (pancreatic cancer) is as rare as ALS; all the others are about 10 to 100 times as prevalent.

Yeah, and when was the last time you knew of someone being diagnosed with pancreatic cancer having to explain what the heck it is to half the people they know? People not only know what it is, they also know that it's one of the cancers that's hard to beat and that it's a painful way to die. At least the people I know do.

quote:
Originally posted by bib:
In Australia it is known as Motor Neurone Disease (MND). Having worked with patients with MND I can assure you that it is one of the most horrible illnesses you can contract. Whereas I normally would not support euthanasia, for MND I make an exception. I am disgusted by the current 'bucket' challenge as I feel it trivialises the disease and all it does it publicise high profile people showing off. They could give money quietly without making a public spectacle. I implore people to contribute to research into MND but not to be involved in silly childish games. I have heard that many people participating in the challenge haven't even bothered to put their hands in their pockets. Shame!

My friend whose father died of ALS when she was 18 has an entirely different take. She is thrilled that because of the ice bucket fad she no longer has to explain what ALS is to so many people and that it is now being called ALS in the US instead of Lou Gehrig's disease. Not to mention how happy she is about the astronomic increase in donations to the ALSA. She owns a tiny winebar, so she capitalized on the faddish interest in raising money for ALS by announcing that on one night 20% of her take, including her tips, would go to the ALSA.

Your personal distaste is just that -- your personal distaste. You don't like childish games? Don't participate. (I wasn't going to do the ice bucket challenge, even in August in California, but I was happy to go drink wine on a Wednesday night.) But you haven't said a single thing that shows that games or publicity stunts are the least bit harmful in this case.

Posted by no prophet (# 15560) on :

I am struck with the ideas that individuals would donate to particular diseases, and that corporations also sponsor various activities related to specific medical or social causes. The level of corporate taxation since Reganomics means that funding cannot be made by governments any longer. The monies no longer exist.

Posted by lilBuddha (# 14333) on :

Tangent/ I think more blame could be put on the desire for profit increase, for acceleration of short term gain, in a more direct fashion than taxes.
/Tangent

Posted by Leorning Cniht (# 17564) on :

quote:
Originally posted by no prophet:
I am struck with the ideas that individuals would donate to particular diseases, and that corporations also sponsor various activities related to specific medical or social causes. The level of corporate taxation since Reganomics means that funding cannot be made by governments any longer. The monies no longer exist.

The American Cancer Society is more than 100 years old. The British Heart Foundation is more than 50 years old. The National Spastics Society, now called Scope, is 60. Mencap and Mind are both nearly 70. The Cystic Fibrosis Foundation is 60, and the UK's Cystic Fibrosis Trust is 50.

The idea that the creation of such single-issue health charities is a result of Reaganomics would seem to have a small problem with causality.

Posted by no prophet (# 15560) on :

NGOs formerly applied for federal and provincial grants. Now they find sponsors. This is about source of the funding not about organizations' existence.

Posted by Anglican_Brat (# 12349) on :

quote:
Originally posted by no prophet:
I am struck with the ideas that individuals would donate to particular diseases, and that corporations also sponsor various activities related to specific medical or social causes. The level of corporate taxation since Reganomics means that funding cannot be made by governments any longer. The monies no longer exist.

That's my problem with philanthropy in general. Whenever I hear a conservative whine that we shouldn't pay taxes for our social safety net because people will "always give money themselves, privately to help others", what they neglect to notice is that people can be very selective when it comes to giving money.

So yes, cancer and ALS research are worthy causes. So is improving literacy in the third world and ending poverty everywhere. Philanthropy necessitates that some causes get more $ than others. Fundamentally, I think there is something wrong with this situation.

Posted by Dave W. (# 8765) on :

quote:
Originally posted by no prophet:
I am struck with the ideas that individuals would donate to particular diseases, and that corporations also sponsor various activities related to specific medical or social causes. The level of corporate taxation since Reganomics means that funding cannot be made by governments any longer. The monies no longer exist.

Nonsense. In 1980 the US federal government spent $10.5B (in constant 2009 dollars) on health research and training; it was $13.8B in 1990, $20.1B in 2000, and $33.8B in 2010. Last year it was $30.8B, down from the peak of $35.1B in 2011 - but that's still nearly three times the amount spent in the year before Reagan.

[See this page; numbers come from Table 3.2 with the deflator from Table 1.3 to convert to constant dollars.]

Posted by no prophet (# 15560) on :

In real spending power, Dave, you are wrong. We have seen general de-funding of all within the public realm. NGOs, education, the arts. It's international. It does those in business good. I have benefitted personally from it and continue to.

Posted by Dave W. (# 8765) on :

quote:
Originally posted by no prophet:
In real spending power, Dave, you are wrong.

No, I'm not - that's the whole point of using constant dollars. (If I had used nominal dollar values, the increase would have been much greater, from $3.6B in 1980 to $34.2B in 2010.)

If you have any sources that show otherwise, feel free to link to them.

And what's more, the fraction of federal tax receipts from corporate income taxes does not show a decline since 1980; if anything, the trend is an increase (though I doubt it's statistically significant.) Over that period it has averaged 10%, fluctuating between a low of 6.2% in 1983 to a high of 14.7% in 2006.

Posted by The5thMary (# 12953) on :

quote:
Originally posted by Bullfrog.:
I wonder why they don't call it Lou Gehrig's Disease anymore.

I do remember being vaguely aware of that one at some points in life, but ALS is new to me.

I had a friend who died of breast cancer; she hated the pink ribbon crap with a passion. Given the cuts to funding for science in this country, I am not comfortable with the emphasis on these large scale fundraising drives, but I have to respect the way that it's executed (not much marketing overhead that I'm aware of) and the good that it can do.

Pitting poor causes against poor causes may be realistic; it's also cruel. You could take that line of reasoning to undercut any charitable effort.

Disclaimer: I have one friend from seminary who suffers from ALS.

I hate the bullying around wearing the red ribbons for AIDS. And I'm not being facetious about the bullying part. When I sang in The Seattle Lesbian and Gay Chorus (now defunct), we were encouraged to wear the red ribbon to show our support for our brothers who had AIDS. It was always Gay men, no one ever mentioned the drug users, both female and male because, really, who cares about THEM? (That was sort of the implication, although not said in so many words). Anyway, at first it was a voluntary thing and I still didn't do it. It wasn't because I didn't think AIDS was serious or that I hadn't lost anyone to it (I lost many more friends than I care to think about), I just didn't understand the point of wearing a ribbon. Then, a year or so later, it got to be a "thing" that defined you and more people in our chorus were adamant that everyone sport the damn ribbon. I got all kinds of grief when I refused to wear it and eventually, I quit the chorus, not just because of that but for other reasons. I don't wear pink breast cancer ribbons, I don't wear American flag lapel pins, I don't even really wear Gay pride stuff anymore.

Posted by no prophet (# 15560) on :

quote:
Originally posted by Dave W.:

quote:
Originally posted by no prophet:
In real spending power, Dave, you are wrong.
No, I'm not - that's the whole point of using constant dollars. (If I had used nominal dollar values, the increase would have been much greater, from $3.6B in 1980 to $34.2B in 2010.)

If you have any sources that show otherwise, feel free to link to them.

And what's more, the fraction of federal tax receipts from corporate income taxes does not show a decline since 1980; if anything, the trend is an increase (though I doubt it's statistically significant.) Over that period it has averaged 10%, fluctuating between a low of 6.2% in 1983 to a high of 14.7% in 2006.

You're doing American figures, and a particular statistical comparison, within which the basic issue can get lost. The real tax rate for corporations has fallen.

I know your country's spending on personal health care is growing with more paid to profit making health care companies and individuals who successfully bill for services. I know our's in Canada has been capped in the public sector, with the additional issue that corp taxes have been reduced greatly, and additionally corp grants and tax breaks have increased, particularly for resource extraction (oil). We are also de-insuring health services or charging for things that used to be covered. We have all sorts of companies doing stuff like this one at $850 million of avoided taxes.

Here's a graph of the general trend we understand with corp tax rates. It is declining. Here's another from the same people. I've seen this and debated this multiple times. It is true that the general taxation rates across the board have fallen - personal and corporate - which makes the comparison more difficult to understand. The corporations in general do not pay their share of the tax bills in any country, except maybe Norway.

The general gutting of public funding for everything, and the making the "user pay" model has had substantial effects on research funding (more of it is coming from companies versus gov't agencies) and the NGOs can't apply for grants when, in some cases the government granting organizations don't even exist any more.

[ 25. August 2014, 02:30: Message edited by: no prophet ]

Posted by Dave W. (# 8765) on :

quote:
Originally posted by no prophet:

quote:
Originally posted by Dave W.:

quote:
Originally posted by no prophet:
In real spending power, Dave, you are wrong.
No, I'm not - that's the whole point of using constant dollars. (If I had used nominal dollar values, the increase would have been much greater, from $3.6B in 1980 to $34.2B in 2010.)

If you have any sources that show otherwise, feel free to link to them.

And what's more, the fraction of federal tax receipts from corporate income taxes does not show a decline since 1980; if anything, the trend is an increase (though I doubt it's statistically significant.) Over that period it has averaged 10%, fluctuating between a low of 6.2% in 1983 to a high of 14.7% in 2006.
You're doing American figures, and a particular statistical comparison, within which the basic issue can get lost. The real tax rate for corporations has fallen.

You claimed that the "monies no longer exist" because of the lower level of corporate taxation due to "Reganomics" (sic). By the latter I took you to refer to Ronald Reagan, who was, if I recall correctly, an American president - so I think I'm entirely justified in quoting American figures.

quote:
I know your country's spending on personal health care is growing with more paid to profit making health care companies and individuals who successfully bill for services.

That has absolutely nothing to do with what I wrote; I gave the levels of federal spending on health research and training, not personal health care. Federal spending on medical research has increased greatly since 1980, and thus can hardly be counted a victim of Reagan's policies. (Other federal spending on health care is also famously expanding, and also can't be starved for funding.)

And whatever you may think of the corporate tax rate, the actual amount collected has increased from $142B in 1980 to $256B in 2013 (with fluctuations from year to year, as previously noted) so that can hardly be blamed for any decrease in medical funding - which, as I noted, didn't occur anyway.

Posted by la vie en rouge (# 10688) on :

Medical research funding is a mess. Pharmaceuticals understandably want to research the things that are going to make them money. Governments can’t afford to fund everything.

The world’s biggest killer is still malaria. Trouble is, it basically only kills poor people so Big Pharma is not all that interested. Funding has hugely increased in recent years because it’s now bankrolled by the Bill and Melinda Gates Foundation, but it still feels a bit wrong to me that research into the world’s most lethal illness has to rely on philanthropy in this way.

Posted by Evangeline (# 7002) on :

quote:
Originally posted by bib:
In Australia it is known as Motor Neurone Disease (MND). Having worked with patients with MND I can assure you that it is one of the most horrible illnesses you can contract. Whereas I normally would not support euthanasia, for MND I make an exception. I am disgusted by the current 'bucket' challenge as I feel it trivialises the disease and all it does it publicise high profile people showing off. They could give money quietly without making a public spectacle. I implore people to contribute to research into MND but not to be involved in silly childish games. I have heard that many people participating in the challenge haven't even bothered to put their hands in their pockets. Shame!

I have a friend who's husband is now totally incapacited by MND. Family and friends gathered to throw buckets of water over each other in the family's backyard on the weekend. The guy affected actuallly smiled from his motorised trolley and his wife and daugher laughed. IT's all too rate int heir lives and it was a less sad way to raise funds and awareness. Good luck to the fundraisers.

Posted by Freddy (# 365) on :

quote:
Originally posted by Evangeline:
Family and friends gathered to throw buckets of water over each other in the family's backyard on the weekend. The guy affected actuallly smiled from his motorised trolley and his wife and daugher laughed. IT's all too rare int heir lives and it was a less sad way to raise funds and awareness. Good luck to the fundraisers.

Same here. My wife and I have been cracking up at all our friends of all ages posting their humorous thirty-second videos.

I am actually surprised that ALS is all that rare because I have been close to two people have died of it and know others as well.

On one occasion, I was with one of them whose speech was no longer understandable at all. When I came in he said, matter-of-factly:

"I'm going to die."

I replied that, yes, he was and that he had had a wonderful life and we would miss him.

This did not sit well with him, and he kept saying "No, no!"

I, of course, understood completely, and said reassuring words of support and friendship. This only seemed to make it worse.

He kept repeating "No! I'm going to die!" getting louder and more emphatic.

Clearly, this was a significant existential moment for him. I was right there with him, holding his hand and empathizing with all my heart.

Then his wife came in and said, "He is saying that he likes your tie!" [Hot and Hormonal]

Posted by bib (# 13074) on :

I still maintain that many of the high profile people doing the challenge, who all have the funds to contribute generously to MND, are not handing over any money. The idea of the challenge is to raise money for research and treatment, not to have a bath in icy water whilst taking a selfie.

Posted by Boogie (# 13538) on :

I donated long before this 'challenge' because my friend, Allison, died of MND - I hadn't heard of it before that.

It has raised millions for a devastating disease that doesn't have enough funding and is a long way from finding a cure. The latest count is 37 million.

Also - it's a bit of fun!

Take a chill pill and enjoy yourselves for once! (I mean by watching and donating, not by having ice water poured on you, that can't be much fun! [Smile]

)

Posted by Beeswax Altar (# 11644) on :

How people spend their own money is none of our business. Donating money to ALS research is not illegal. Dumping ice over your head to raise awareness of ALS is not illegal. So, people have every right to donate money to ALS or dump ice over their heads to raise awareness. If you don't think ALS is worthy of the attention it is getting, then don't send any money or dump any ice over your head.

Oh and to the idea that any government would award money for medical research or anything else in a way deemed fair and equitable by everybody... [Killing me]

Posted by Lyda*Rose (# 4544) on :

quote:
Originally posted by bib:
I still maintain that many of the high profile people doing the challenge, who all have the funds to contribute generously to MND, are not handing over any money. The idea of the challenge is to raise money for research and treatment, not to have a bath in icy water whilst taking a selfie.

Evidence that "many" high profile people don't do both?

Posted by cliffdweller (# 13338) on :

quote:
Originally posted by Lyda*Rose:

quote:
Originally posted by bib:
I still maintain that many of the high profile people doing the challenge, who all have the funds to contribute generously to MND, are not handing over any money. The idea of the challenge is to raise money for research and treatment, not to have a bath in icy water whilst taking a selfie.
Evidence that "many" high profile people don't do both?

I imagine particularly high profile people are doing both-- if only because of the risk of exposure to ridicule if they don't.

High profile people who are giving as a result of this challenge will, of course, have all sorts of motives at play-- self-promotion, image-protection, etc. as opposed to pure altruism. But if I'm honest, that's true of most anything good I do as well.
But for an ALS patient desperately waiting for a cure, that hardly matters.

Posted by Evangeline (# 7002) on :

Celebrity sells bib, even if the celebrity doesn't put their hand in their own pocket, they are encouraging lots of others to do so. That's not a bad thing. As well as the funds it's about making ppl with MND and their families feel part of the community, we're saying we know this is a shitty disease and there's not much we can do but we'd like to. The power of celiebrity to disseminate that message and have it picked up by the wider community is huge. Now you might believe that's a sad reflection on the state of our society and you'd probably be right but that's the reality those living with and raising furnds for med rx have to live in.

FFS, let's not turn something good into something bad, there's more than enough bad in the world.

Posted by Lyda*Rose (# 4544) on :

quote:
Originally posted by cliffdweller:

quote:
Originally posted by Lyda*Rose:

quote:
Originally posted by bib:
I still maintain that many of the high profile people doing the challenge, who all have the funds to contribute generously to MND, are not handing over any money. The idea of the challenge is to raise money for research and treatment, not to have a bath in icy water whilst taking a selfie.
Evidence that "many" high profile people don't do both?
I imagine particularly high profile people are doing both-- if only because of the risk of exposure to ridicule if they don't.

High profile people who are giving as a result of this challenge will, of course, have all sorts of motives at play-- self-promotion, image-protection, etc. as opposed to pure altruism. But if I'm honest, that's true of most anything good I do as well.
But for an ALS patient desperately waiting for a cure, that hardly matters.

That's what I was thinking, cliffdweller.

Posted by Al Eluia (# 864) on :

My favorite response to the Ice Bucket Challenge is Sir Patrick Stewart's.

Posted by Kelly Alves (# 2522) on :

That better not be single malt.

Posted by Liopleurodon (# 4836) on :

quote:
Originally posted by bib:
They could give money quietly without making a public spectacle.

They could. And almost certainly lots of people have. And this "they could donate quietly" line applies to pretty much every kind of charitable activity. Race For Life? Waste of time. Everyone who could have sponsored someone could just give money quietly without anyone needing to leave the house. Comic Relief? Children in Need? Meh. Who needs an evening of TV to inspire what they should be doing anyway?

Don't get me wrong - I know that a great many slacktivist campaigns are narcissistic and pointless. Even some effort-heavy campaigns are. But I have a pretty pragmatic, straightforward way of figuring out how I feel about charity campaigns. Do they work? As in - are there children being fed, or clinical trials happening, or whatever good result, because of this campaign? In the case of people changing their facebook profile picture, no. In the case of the icebucket challenge - the last I saw it had raised $50 million. Narcissism be damned. I don't care. That is going to help people.

People could just sit at home and quietly donate. But they don't. Or at least not at anything like the rates that they do when something like this happens.

Posted by no prophet (# 15560) on :

quote:
Originally posted by Beeswax Altar:
Oh and to the idea that any government would award money for medical research or anything else in a way deemed fair and equitable by everybody...

Your response indicates that you do not understand anything about how research grants are awarded.

That's not how it works. The government agency merely has the funds available, and via independent and blind peer review of proposals, funds the research. It has nothing whatsoever to do with fairness of distribution of funds, nor equality of the distribution. Only merit of the proposed research as judged by peers. They specifically have no agenda and no directive authority. It is all peer review based, with the reviewers independently reviewing.

The difference between that and companies funding research is that the corporations specifically decide, usually in advance, what they are funding, and who they are funding. They force contracts and stipulations on the researchers, such that the projects are about what they deem to be probable and economically profitable. They usually also have control over how and if the research is published. Pulling and reassigning monies in midstream based on their profit-making agenda. The level of independence is far, far less with such corporate funding. Unhappily, governments are starting to adopt some of the same tactics with in-house science, where they don't allow in Canada their researchers to talk to anyone about data and research, let alone publish it unless it suits their agenda. Political in the case of governments.

Posted by Gramps49 (# 16378) on :

Dumping ice water on one's head may not be illegal, but it is a waste of resources, especially in areas that are experiencing a severe drought.

Then too, consider the people of GAZA who have had their potable water supply cut off. Several Palestinians have posted their response to the ice bucket challenge. Some showing sand being dumped on them.

Posted by cliffdweller (# 13338) on :

quote:
Originally posted by Gramps49:
Dumping ice water on one's head may not be illegal, but it is a waste of resources, especially in areas that are experiencing a severe drought.

Then too, consider the people of GAZA who have had their potable water supply cut off. Several Palestinians have posted their response to the ice bucket challenge. Some showing sand being dumped on them.

One prays that becomes viral and the "sand bucket challenge" becomes the Next New Thing, drawing attention to the oppression of the Palestinians. (Please wear goggles though-- corneal abrasions are intensely painful!)

This is a noisy world. There is a lot of pain, a lot of suffering, and much work to be done, but it all gets lost in the noise. Even from drought-ravaged California, I cannot begrudge any worthy effort from doing what needs to be done to draw attention to one of those many needs.

Posted by Lamb Chopped (# 5528) on :

quote:
Originally posted by Gramps49:
Dumping ice water on one's head may not be illegal, but it is a waste of resources, especially in areas that are experiencing a severe drought.

Seriously? Palestine I can understand, but places like California etc., you just go stand in the garden when you do it. Voila. Instant re-use.

Posted by Al Eluia (# 864) on :

quote:
Originally posted by Kelly Alves:
That better not be single malt.

Why?

If it were me it would be bourbon.

Posted by Kelly Alves (# 2522) on :

I dunno, I heard it was unforgivable to ice single malt. Or is that his sacrifice?

quote:
Originally posted by Lamb Chopped:

quote:
Originally posted by Gramps49:
Dumping ice water on one's head may not be illegal, but it is a waste of resources, especially in areas that are experiencing a severe drought.
Seriously? Palestine I can understand, but places like California etc., you just go stand in the garden when you do it. Voila. Instant re-use.

I heard of a couple tech companies trying to boost the ante by dumping water on their entire office staff-- which means, like, dumpsters full. I can verify that, reasonable or not, California attitudes toward people who flout drought measures can veer toward scathing. You better not have been caught with a green lawn in my neighborhood in1977.

Most of my local friends who have done the challenge have indeed chosen to do it on patches of lawn and such, though.

Posted by lilBuddha (# 14333) on :

You could always do it Matt Damon's way.

Posted by Jade Constable (# 17175) on :

quote:
Originally posted by bib:
I still maintain that many of the high profile people doing the challenge, who all have the funds to contribute generously to MND, are not handing over any money. The idea of the challenge is to raise money for research and treatment, not to have a bath in icy water whilst taking a selfie.

Do you have access to their bank statements? How could you possibly know this?

Posted by Gramps49 (# 16378) on :

A comment from Queensland.

http://www.pedestrian.tv/news/arts-and-culture/newsreader-beautifully-shuts-down-ice-bucket-chall/600a2c06-7dec-4f27-a74a-1ab 99a534c75.htm

Posted by Kelly Alves (# 2522) on :

quote:
Originally posted by lilBuddha:
You could always do it Matt Damon's way.

Well done, sir!

In all seriousness, well done. He avoided being a buzzkill while still reminding us that water is not an accessory, it's a vital resource.

Posted by cliffdweller (# 13338) on :

quote:
Originally posted by Kelly Alves:

quote:
Originally posted by lilBuddha:
You could always do it Matt Damon's way.
Well done, sir!

In all seriousness, well done. He avoided being a buzzkill while still reminding us that water is not an accessory, it's a vital resource.

And while he was using the challenge to promote his own charity, he drew the two together well. And his charity is one that is indeed desperately needed. He managed to highlight that need (clean water) w/o denigrating or detracting in any way from the need for ALS research, showing faith that it's not a zero sum game and people are capable of appreciating the need for both. Very well done indeed.

Posted by Eutychus (# 3081) on :

That's pretty close to the WWJD answer, I think.

Posted by JoannaP (# 4493) on :

According to the BBC:

quote:
The stunt is typically intended to raise money and awareness for the Amyotrophic Lateral Sclerosis (ALS) Association. Its British equivalent, the Motor Neurone Disease Association, has also benefited.

From 29 July to 28 August this year ALS received $98.2m - compared with $2.7m donated during the same period last year.

Pre-ice bucket, the MND Association would receive on average £200,000 a week in donations. From 22 to 29 August, it received £2.7m.

n the UK, other charities have benefited with Macmillan Cancer Support raising £3m from challenges. Water Aid has seen a spike in donations, including £47,000 in one day - 50% higher than it ever received in a single day before. The money came in part from people bemoaning the water wasted in the challenges.

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