ALS Ice Bucket Challenge

[manticle]

The idea that we need to be purely altruistic or our charity is somehow worthless is a little strange too though. If you help an old lady mow her lawn and she gives you a piece of cake, are you an arsehole?

 

[philmud]

Agree. No-one complains about a lack of altruism when people sign up to "sponsor" a child and yet this mode of donation is so successful because the sponsor gets to feel a connection with the sponsee, who has to further pump their turned by sending letters of gratitude! The very notion that someone struggling to survive needs to stroke the ego of a fat, rich westerner so they'll keep sending them a few bucks is pretty offensive, yet it's such effective marketing that it the charities won't stop doing it.
If tipping water on your head for a charity nets you some social capital, good for you and good for MND sufferers too!

 

[Florian]

Agree. No-one complains about a lack of altruism when people sign up to "sponsor" a child and yet this mode of donation is so successful because the sponsor gets to feel a connection with the sponsee, who has to further pump their turned by sending letters of gratitude! The very notion that someone struggling to survive needs to stroke the ego of a fat, rich westerner so they'll keep sending them a few bucks is pretty offensive, yet it's such effective marketing that it the charities won't stop doing it.
If tipping water on your head for a charity nets you some social capital, good for you and good for MND sufferers too!

I know a few people who sponsor a child or children, most of them are neither fat nor rich, some aren't even westerners.

Also, how does this compare to raising children? If parents wouldn't get any joy and happiness out of their own children I doubt many of us would have them in the first place.

 

[TimT]

There are two good things the ice bucket challenge is doing. One is a temporary, short-term good - raising money; the other is more a medium-term good - raising attention about a little known disease and the charitable associations that exist to help those affected by the disease. It will help the cause stick around in people's minds and they'll be a little more aware of it from now on. People will remember the ice bucket challenge like they remember other weird internet fads - planking, for instance. Sometimes I think raising awareness and publicising matters like this can work incrementally, bit by bit, step by step.

I read that the US ALS association tried to copyright the ice bucket challenge, which seemed a little strange as it is going to be a one off craze. An article I read about the attempted copyrighting mentioned that there were ice-bucket related items of merchandise which non-ALS associations were trying to sell. Maybe there's a t-shirt or something.

 

[philmud]

I know a few people who sponsor a child or children, most of them are neither fat nor rich, some aren't even westerners.

Sure, it was just rhetoric & this doesn't detract from my point. I bet they are all rich though, by global standards.

Also, how does this compare to raising children? If parents wouldn't get any joy and happiness out of their own children I doubt many of us would have them in the first place.

My experience of having kids is that the joy & happiness isn't ego driven, it's intrinsic.

I don't think it's always ego driven where charity is concerned, but in the case of child sponsorship, it is. There is no benefit to the recipient communities, they just need to bow & scrape (here's a letter in YOUR language, and a photo of me looking suitably impoverished & grateful.) to their first world benefactor whose primary virtue was having the good fortune to be born in a rich country.

Don't get me wrong, I'm all for donating to poor people. I just think child sponsorship is horse shit. But if it entices people who won't donate otherwise, I guess it's a good thing.

 

[GalBrew]

Does anyone even know what ALS/MND actually is after all this ice bucket stuff? I ask not to be a smart ass, but I always wonder about how effective 'awareness' campaigns actually are.....other than to make people aware that there is a 'thing' called ALS that is 'bad'.

 

[TimT]

Some people might look around on MND Australia's FAQ pages. Others might make the connection with Stephen Hawking. Still others may remember a story about a family member. I think it will have helped to raise some awareness about the disease at least. But, like I said, publicity for this stuff can build incrementally.

 

[Dave70]

Here's an ice bucket challenge I want no part of.

 

[wobbly]

Another little know fact associated with this debilitating disease is that it is often missed diagnosed when in fact the suffer may have "Lymes Disease" also a debilitating disease with look alike symptoms to ALS/MND

Lymes disease isn't well known in Australia and fortunately can be treated with massive amounts of antibiotics "IF" (and that's a big "IF") diagnosed early and to do that you need to send a blood sample to the UK for testing as it can't be tested (yet) in Australia

I have a very close friend who was miss diagnosed with MND a couple of years ago has gone down hill quite considerably to the point of having to have daily help and use a wheel chair for mobility and now she finds out that she doesn't have MND but Lymes disease!!!

The anti biotic treatment "may" help her by limiting further degeneration but because of the late stage diagnosis it is unlikely to improve her situation

The medical authorities don't/.won't recommend testing for Lymes disease as there is the view amongst the learned decision makers that it doesn't exist in Australia

So what is needed is an increased awareness that MND just might not be MND and that routine testing of someone with MND symptoms for Lymes disease should be a given

The subject of Lymes disease needs wide spread discussion to raise general awareness

Cheers

Wobbly

 

[Kumamoto_Ken]

Does anyone even know what ALS/MND actually is after all this ice bucket stuff?

Some people might look around on MND Australia's FAQ pages. Others might make the connection with Stephen Hawking. Still others may remember a story about a family member. I think it will have helped to raise some awareness about the disease at least. But, like I said, publicity for this stuff can build incrementally.

Personally, I became much more aware of it because a former footballer/football coach has it. That might say more about how sports/sporting people influence some of us though.
I'll air my great shame here though, I am a Demons fan. Through that I feel a connection with Neale Daniher* and hate what he's going through, and what the eventual outcome will be.
https://au.news.yahoo.com/vic/a/24740150/neale-daniher-reveals-battle-with-motor-neurone-disease/

* I once yelled out "Go Dees!" to Neale as I rode my pushie past the Junction Oval and he was in the car park. He turned and gave me a wave...so you can see the strength of that connection we have.

Ed: linky

 

[GalBrew]

I also suffer from that awful condition......of being a Dees fan.