You know, I'd imagine a cure is a ways off...even something to prolong quality of life.
But - and I say this as someone who thinks some have used this for spotlight purposes (and true, really really small potatoes overall) - I sure hope some of the monies raised can be given to those caring for their loved ones with ALS.
It's draining both financially and emotionally...would be great if they could get some relief as well.
I donate without making a self promotion out of it.
So what? I don't understand the "to cool for school" attitude. Thank you for making your donation, but why be a dick about it? Is posting that you donated on a public forum not a form of self promotion? You may as well have recorded yourself pouring a bucket of ice on y our head. People are raising awareness, donating money, and having fun in the process.
Be a dick about it? Really? Personal attacks aren't allowed here.
It's not really a personal attack. It's how you are coming off. If anyone disagrees, please let me know.
It is self-promotion though… It's as bad as a selfie. A selfie with a bucket of ice water. I don't condemn it though.
Well, it might be self-promotion for celebrities, I don't know. But anyone I personally know who did it actually did it because they felt like they'd look like dicks if they didn't after being challenged, lol.
With all its sham, drudgery, and broken dreams, it is still a beautiful world. Be careful. Strive to be happy. ~ Desiderata
Its not the same as a selfie. Even if you ignore the ridiculous millions which have been raised, the challenge at the very least still spreads awareness of the disease. A selfie doesn't do that.
Its not the same as a selfie. Even if you ignore the ridiculous millions which have been raised, the challenge at the very least still spreads awareness of the disease. A selfie doesn't do that.
Definitely. This whole thing is GOOD. Tons of money raised, tons of awareness raised, and people having a bit of fun (seen all those vids with the kids involved, really enjoying it?). I'm a bit stunned that people are criticizing it.
With all its sham, drudgery, and broken dreams, it is still a beautiful world. Be careful. Strive to be happy. ~ Desiderata
I'm glad PJ did it to raise awareness and support their friend Steve. I'm glad somebody, Stone, finally challenged me. nobody else would have because my wife has had ALS for 10 years now, struck her in her late 30s and has been mercifully slow onset. everyone we know has done the challenge now, but has also walked in the march year after year, and wouldn't dream of challenging me. I'm glad you're all talking about, and I hope you accept Stone's challenge. But don't give to ALSA, please, they do help, but... ALS TDI is actually working toward a cure.
Try it... dump a bucket of ice water on yourself. Feel the freeze instantly paralyze you, limit your movement, constrict and spasm your muscles. Imagine waking up day after day like that... then talk to me about how lame it all is while i watch baseball players parade around in pink for a month while only giving one day to a disease nicknamed after one of their legends...
I'm glad PJ did it to raise awareness and support their friend Steve. I'm glad somebody, Stone, finally challenged me. nobody else would have because my wife has had ALS for 10 years now, struck her in her late 30s and has been mercifully slow onset. everyone we know has done the challenge now, but has also walked in the march year after year, and wouldn't dream of challenging me. I'm glad you're all talking about, and I hope you accept Stone's challenge. But don't give to ALSA, please, they do help, but... ALS TDI is actually working toward a cure.
Try it... dump a bucket of ice water on yourself. Feel the freeze instantly paralyze you, limit your movement, constrict and spasm your muscles. Imagine waking up day after day like that... then talk to me about how lame it all is while i watch baseball players parade around in pink for a month while only giving one day to a disease nicknamed after one of their legends...
Thank you for the personal perspective on this. Your last paragraph certainly resonated.
I'm glad PJ did it to raise awareness and support their friend Steve. I'm glad somebody, Stone, finally challenged me. nobody else would have because my wife has had ALS for 10 years now, struck her in her late 30s and has been mercifully slow onset. everyone we know has done the challenge now, but has also walked in the march year after year, and wouldn't dream of challenging me. I'm glad you're all talking about, and I hope you accept Stone's challenge. But don't give to ALSA, please, they do help, but... ALS TDI is actually working toward a cure.
Try it... dump a bucket of ice water on yourself. Feel the freeze instantly paralyze you, limit your movement, constrict and spasm your muscles. Imagine waking up day after day like that... then talk to me about how lame it all is while i watch baseball players parade around in pink for a month while only giving one day to a disease nicknamed after one of their legends...
I'm glad PJ did it to raise awareness and support their friend Steve. I'm glad somebody, Stone, finally challenged me. nobody else would have because my wife has had ALS for 10 years now, struck her in her late 30s and has been mercifully slow onset. everyone we know has done the challenge now, but has also walked in the march year after year, and wouldn't dream of challenging me. I'm glad you're all talking about, and I hope you accept Stone's challenge. But don't give to ALSA, please, they do help, but... ALS TDI is actually working toward a cure.
Try it... dump a bucket of ice water on yourself. Feel the freeze instantly paralyze you, limit your movement, constrict and spasm your muscles. Imagine waking up day after day like that... then talk to me about how lame it all is while i watch baseball players parade around in pink for a month while only giving one day to a disease nicknamed after one of their legends...
Excellent post that could only be written by someone such as you.
Do you know what actually happens if you have ALS?
In the beginning, it’ll feel like old age—unless you’re 27, like Pete Frates was when he was diagnosed. Something will feel different, like you've slept in a bed the shape of a trapezoid the night before and that’s why your hands feel sluggish. It’ll feel like sore fingers, but you’ll question if it’s even possible for fingers to get sore. Then you’ll realize that soreness is actually weakness. You’ll go to open a door and despite how much your brain protests—“You can do this!"—you won’t be able to. Then, holding a knife and fork will become a chore. It’ll make you avoid ordering steak—yes, steak. You’ll start making fashion choices based on which clothes have fewer buckles and buttons. You’ll run out of breath shampooing your hair.
When the disease is in its early stages and has only claimed your fine motor skills, you won’t be out enjoying life or checking off a—forgive me—bucket list. No, you’ll be in the hospital, where neurologists will shock you with electricity and poke you with needles. Since ALS is a disease with no known cause, doctors have to exclude every other possibility in order to diagnose it. Even with our advanced medical system, doctors can’t just check your blood for ALS. No, they’ll run so many tests you’ll be convinced the doctors are trying to clone you. It’ll be exhausting, frustrating, and ultimately heartbreaking as you get your hopes up for any disease other than this one.
Meanwhile, you’ll watch your muscles become concave and disappear, completely adamant that you once knew how to use them but also like you never even learned in the first place. The disease will spread, each day claiming a little bit more of your ability to walk, speak, chew, and swallow until you reach the point of complete paralysis. Somewhere in the span of three to five years, the disease will spread to the lungs and breathing on your own won’t be an option anymore.
This shitty disease only affects about two to five people in every 100,000, but it’s equal parts a blessing and a curse that it’s so rare. Only a few have to suffer, which means that it’s largely ignored by big pharmaceutical companies. The average drug costs $5 billion from conception to initial tests on lab mice to the WebMD-driven retail market, so funding such a rare disease isn’t exactly the best return on investment. Federal funding is low—down from $59 million in 2010 to $40 million in 2014. Even the number of charities supporting ALS research is a decimal point compared with the number of charities for, say, cancer.
If the definition of depression is hopelessness, then this disease embodies it perfectly. Before July 29, when the Ice Bucket Challenge went viral, ALS wasn’t something people spoke about very often. It was that disease that claimed a friend’s uncle’s life, fuzzy and disconnected—not something that is prominently displayed in one of the world’s most visited websites. After the challenge, the ALS Association has raised $41.8 million, compared with $2.1 million in the same span of time as last year. The cause even spread across the Atlantic and reached the UK. At long last, ALS patients find themselves in the spotlight.
Enter the douche ex machina here to ruin the day: the self-righteous friend complaining via Facebook about people not following the rules, the person who texts you a meme about African children without water, or the journalist/media commentator who needs to find a way to call out "hashtag activism." We took something that by all accounts is a success and found a way to make it terrible.
The worst people aren’t the hashtag activists—they’re the ones sitting behind their computers and typing angry prose of disapproval. You know the type, the ones who point out how unrealistic something is when they’re watching a Seth Rogen movie. We know the ALS Ice Bucket Challenge isn’t perfect, just like we know that Seth Rogen couldn’t possibly launch into the ceiling if he sat on an airbag. But that doesn’t mean we need to frantically wave our hands in the air about how not everyone donated, that we should’ve donated the money we spent on ice instead, or that we’re “wasting” buckets of water on our heads.
Yes, people are spending money on ice to dump over their heads, but that’s an element of fundraising, like making team T-shirts for a charity or bringing cookies to a bake sale. All the cynics who want people to donate in humility and not post it on our social media feeds completely overlook the fundamental reality that humans are social animals. In the hierarchy of needs, we search for community and fulfill the urge to belong, so donating without dumping buckets of water on our heads disconnects us from a cause. It’s about being a part of something.
The hashtag activists actually create that community. Since when did fighting for something—whether a cure for a disease or gay rights—mean that you needed permission to sit with the cool kids at lunch? What's the harm of having them there, even the ones who ended up there by accident, the people dumping buckets of iced water on their heads with zero connection to the cause? They are the people who end up at a bar where the proceeds go to charity, and they’re only drinking for fun, but who the fuck are you to kick them out of the party? They’re pumping up the crowds, having a fabulous time, and building momentum. Or are you that desperate for your Facebook feed to go back to engagement announcements and mediocre attempts at food photography?
Keep dumping buckets of iced water over your head and I’ll keep “liking” it. The Ice Bucket Challenge is one of the few things that's given me hope since I got diagnosed with early ALS six weeks ago, at age 29.
I've seen supporting peace be seen as controversial. Now we're seeing being charitable as being controversial. I didn't know raising money for a charitable organization or program could be controversial. Next thing you know, we'll hear being kind or helping others in need or breathing is controversial. I'm not holding my breath.
“The fear of death follows from the fear of life. A man [or woman] who lives fully is prepared to die at any time.”
I've seen supporting peace be seen as controversial. Now we're seeing being charitable as being controversial. I didn't know raising money for a charitable organization or program could be controversial. Next thing you know, we'll hear being kind or helping others in need or breathing is controversial. I'm not holding my breath.
Yeah, when you start complaining about the ice bucket challenge it is time to step back and reflect on life a bit. You can think it is stupid, but maybe not worth a post saying it is stupid.
Sure the benefits are great and glad it came about, helping give insight and possibly help with this awful disease, but this type of giving just reinforces the notion that people give for their own needs more than that of the charity. Not only do they get own warm Fuzzies normally gotten from helping others, also gives the promotion and Look at Me as with a selfie, which to me represents the selfishness of humans. So it may be easy to criticize those speaking against it, falling to recognize ones self interest is not being honest with ones self.
Gave my seat up to old lady on long bus ride home Thursday. Senior got benefit but I felt good and received praise from other riders. Soooo I do it as well but recognize my benefit.
i'm not at all well off or i'd be donating funds to all sorts of different foundations, organizations, childrens' hospitals, burn centers, cancer this & that & i'd feed the fucking world if i could. but i would not have my shit all out there. it would be so much more fantastic to be the mystery guy, low-key as can be who does not own a yacht or a mansion on a hill.
is it really a challenge to dump ice water over one's head? really? that's a challenge? yeah ok.
that's a challenge for cobras, iguanas, tree frogs, rattle snakes, turtles, constrictors & other reptiles & amphibians.
it isn't that i don't like it. i just don't understand it & think it's a bit of self self self. whatever. it is very good to see wealthy folks do good things with their money. celebrities & the like - how the fuck did that ever happen anyways?
let's see the no more wars fucking challenge from world leaders? that's what i'd like to see or the geewiz we aren't gonna rape & torture challenge
it's still kinda entertaining to see some asshole get cold water dumped over him or her self
Nah, you're not an asshole by nature, I don't think.
And yeah, it's a fantasy of mine that were I ever wealthy enough, I'd go the anonymous route in giving. I was gonna list out how but you pretty much covered it (though I'd add animal rescues, sanctuaries and the like).
I'm kind of with you on the ego / selfie side of it - you can tell some have no clue as to the intent - but after reading acutejam's post about thinking of the physical effects as the ice hits the body...it opened my eyes some (hoping that those take that view into account when going through the dump).
It's also quite beautiful, the generosity of people who've donated, whether quietly or with fanfare. It must feel amazing for those with ALS, for those who love them, to know they're not forgotten or invisible.
Surely these efforts can go towards similar diseases? Look what Jerry Lewis was able to accomplish with his telethons for MD.
While I think the causes are fantastic, I have to call to question the integrity of some major societies given the proportion of money attributed to salaries and the like versus research:
CBC's Marketplace analyzed the Canadian Cancer Society’s financial reports dating back a dozen years. It discovered that each year, as the society raised more dollars, the proportion of money it spent on research dropped dramatically — from 40.3 per cent in 2000 to under 22 per cent in 2011.
I don't wish to come across as the Grinch- I have had people in my family affected by cancer- one is dying right now. And I realize there are people that need to get paid for running these organizations, but it seems excessive that 78% of every dollar goes towards something far removed from curing the disease.
Bluntly speaking, the optics of such present the CCS as more of a business that operates on people's hopes instead of an agency concerning itself with a cure.
well, there are also the facilities/programs to help people rehab , etc. THAT is going to direct patient care and requires employees in the field. While it may not be going to cure, it IS helping folks. Something to consider when looking at wages paid in general.
Not today Sir, Probably not tomorrow.............................................. bayfront arena st. pete '94
you're finally here and I'm a mess................................................... nationwide arena columbus '10
memories like fingerprints are slowly raising.................................... first niagara center buffalo '13
another man ..... moved by sleight of hand...................................... joe louis arena detroit '14
While I think the causes are fantastic, I have to call to question the integrity of some major societies given the proportion of money attributed to salaries and the like versus research:
CBC's Marketplace analyzed the Canadian Cancer Society’s financial reports dating back a dozen years. It discovered that each year, as the society raised more dollars, the proportion of money it spent on research dropped dramatically — from 40.3 per cent in 2000 to under 22 per cent in 2011.
I don't wish to come across as the Grinch- I have had people in my family affected by cancer- one is dying right now. And I realize there are people that need to get paid for running these organizations, but it seems excessive that 78% of every dollar goes towards something far removed from curing the disease.
Bluntly speaking, the optics of such present the CCS as more of a business that operates on people's hopes instead of an agency concerning itself with a cure.
well, there are also the facilities/programs to help people rehab , etc. THAT is going to direct patient care and requires employees in the field. While it may not be going to cure, it IS helping folks. Something to consider when looking at wages paid in general.
Up here, it is our hospitals and medical system that is in the business of helping people as you have described. If you will, please elaborate a little to help me understand what you are getting at.
And please understand that I think supporting these types of causes is great. I just think that in some cases, the organizational models would do well to restructure so that a greater percentage of the contributions goes directly towards fighting the disease and less towards staff and other expenses which are far removed from the disease.
Sure the benefits are great and glad it came about, helping give insight and possibly help with this awful disease, but this type of giving just reinforces the notion that people give for their own needs more than that of the charity. Not only do they get own warm Fuzzies normally gotten from helping others, also gives the promotion and Look at Me as with a selfie, which to me represents the selfishness of humans. So it may be easy to criticize those speaking against it, falling to recognize ones self interest is not being honest with ones self.
Gave my seat up to old lady on long bus ride home Thursday. Senior got benefit but I felt good and received praise from other riders. Soooo I do it as well but recognize my benefit.
So charity is only really worthy of respect when the person giving doesn't feel good about It?? You don't seriously think that there is something somehow negative about feeling good about helping others, do you? Only pure altruism is truly worthy? That expectation flies in the face of evolution.
I think this idea that it's about "look at me" is a huge leap. Talk about making assumptions about people based on nothing. What I think most people are doing is simply being a part of something where you're communicating with others to move forward a good cause.
The pessimism that comes with criticisms of the challenge are really disheartening.... and annoying.
With all its sham, drudgery, and broken dreams, it is still a beautiful world. Be careful. Strive to be happy. ~ Desiderata
Gave my seat up to old lady on long bus ride home Thursday. Senior got benefit but I felt good and received praise from other riders. Soooo I do it as well but recognize my benefit.
Most of us commit these spontaneous acts without forethought to how they'll be perceived by them. We do these things because they're the right thing to do; our conscience wouldn't allow otherwise or certainly take ourselves to task afterward.
If I can do something nice for someone else - whether a small kindness or something larger - why not? Stroking our egos from time to time (or at least giving it an eskimo kiss) is part of being human. Not a big price to pay if something good comes from it.
(I'll also say this - my eyes have definitely been opened by the personal accounts I've read, whether here or elsewhere, and how this campaign has affected them. Humbling, for me.)
The pessimism that comes with criticisms of the challenge are really disheartening.... and annoying.
it really is...i'd add sickening as well
Haters gonna hate! The immense popularity gets haters (a group to which I was born bit struggle too leave) all riled up so they say things like "waste of water" or "self promotion" cuz it reminds them of Miley Cyrus or some shit. Nevermind the millions raised, the fact that Cyrus loving' idiots actually know what ALS is now, and the fact that it has opened a new frontier for viral fundraising.... Nope it's a waste of water that could NEVER be feasibly sent to a place without clean water.
Gave my seat up to old lady on long bus ride home Thursday. Senior got benefit but I felt good and received praise from other riders. Soooo I do it as well but recognize my benefit.
Most of us commit these spontaneous acts without forethought to how they'll be perceived by them. We do these things because they're the right thing to do; our conscience wouldn't allow otherwise or certainly take ourselves to task afterward.
Right. It's guilt. Looking to be stroked. Whatever but always for givers self interest not the receiver. It's not a bad thing. Just is. This particular challenge just plays into this human need.
Gave my seat up to old lady on long bus ride home Thursday. Senior got benefit but I felt good and received praise from other riders. Soooo I do it as well but recognize my benefit.
Most of us commit these spontaneous acts without forethought to how they'll be perceived by them. We do these things because they're the right thing to do; our conscience wouldn't allow otherwise or certainly take ourselves to task afterward.
Right. It's guilt. Looking to be stroked. Whatever but always for givers self interest not the receiver. It's not a bad thing. Just is. This particular challenge just plays into this human need.
Not necessarily guilt or "always" to be applied.
Giving up your seat - did you think twice when you did it?
When I hold the door for someone, give a few bucks to someone who needs it, letting a person ahead of me in line at the market...sure I feel good doing it during and after, but that's not necessarily or always the impetus.
In the end, it's a positive and hopefully a ripple-effect.
Comments
But - and I say this as someone who thinks some have used this for spotlight purposes (and true, really really small potatoes overall) - I sure hope some of the monies raised can be given to those caring for their loved ones with ALS.
It's draining both financially and emotionally...would be great if they could get some relief as well.
And I said thank you for your donation.
"Hear me, my chiefs!
I am tired; my heart is
sick and sad. From where
the sun stands I will fight
no more forever."
Chief Joseph - Nez Perce
He made me smile.
"Hear me, my chiefs!
I am tired; my heart is
sick and sad. From where
the sun stands I will fight
no more forever."
Chief Joseph - Nez Perce
"...I changed by not changing at all..."
This whole thing is GOOD. Tons of money raised, tons of awareness raised, and people having a bit of fun (seen all those vids with the kids involved, really enjoying it?). I'm a bit stunned that people are criticizing it.
Try it... dump a bucket of ice water on yourself. Feel the freeze instantly paralyze you, limit your movement, constrict and spasm your muscles. Imagine waking up day after day like that... then talk to me about how lame it all is while i watch baseball players parade around in pink for a month while only giving one day to a disease nicknamed after one of their legends...
Best wishes to your wife, and to you.
"...I changed by not changing at all..."
The paragraph about funding / treatment leaves me shaking my head.
Gave my seat up to old lady on long bus ride home Thursday. Senior got benefit but I felt good and received praise from other riders. Soooo I do it as well but recognize my benefit.
is it really a challenge to dump ice water over one's head? really? that's a challenge?
yeah ok.
that's a challenge for cobras, iguanas, tree frogs, rattle snakes, turtles, constrictors & other reptiles & amphibians.
it isn't that i don't like it. i just don't understand it & think it's a bit of self self self. whatever. it is very good to see wealthy folks do good things with their money. celebrities & the like - how the fuck did that ever happen anyways?
let's see the no more wars fucking challenge from world leaders? that's what i'd like to see
or the geewiz we aren't gonna rape & torture challenge
it's still kinda entertaining to see some asshole get cold water dumped over him or her self
whatever
call me an asshole
"Hear me, my chiefs!
I am tired; my heart is
sick and sad. From where
the sun stands I will fight
no more forever."
Chief Joseph - Nez Perce
And yeah, it's a fantasy of mine that were I ever wealthy enough, I'd go the anonymous route in giving. I was gonna list out how but you pretty much covered it (though I'd add animal rescues, sanctuaries and the like).
I'm kind of with you on the ego / selfie side of it - you can tell some have no clue as to the intent - but after reading acutejam's post about thinking of the physical effects as the ice hits the body...it opened my eyes some (hoping that those take that view into account when going through the dump).
It's also quite beautiful, the generosity of people who've donated, whether quietly or with fanfare. It must feel amazing for those with ALS, for those who love them, to know they're not forgotten or invisible.
Surely these efforts can go towards similar diseases? Look what Jerry Lewis was able to accomplish with his telethons for MD.
While it may not be going to cure, it IS helping folks. Something to consider when looking at wages paid in general.
Not today Sir, Probably not tomorrow.............................................. bayfront arena st. pete '94
you're finally here and I'm a mess................................................... nationwide arena columbus '10
memories like fingerprints are slowly raising.................................... first niagara center buffalo '13
another man ..... moved by sleight of hand...................................... joe louis arena detroit '14
"Nah, you're not an asshole by nature, I don't think." you're right, hedonist, by nature i'm not an asshole, i don't think
one tough gentleman, navy seal (for over 30 years) 'gary welt' had als.
"Hear me, my chiefs!
I am tired; my heart is
sick and sad. From where
the sun stands I will fight
no more forever."
Chief Joseph - Nez Perce
And please understand that I think supporting these types of causes is great. I just think that in some cases, the organizational models would do well to restructure so that a greater percentage of the contributions goes directly towards fighting the disease and less towards staff and other expenses which are far removed from the disease.
I think this idea that it's about "look at me" is a huge leap. Talk about making assumptions about people based on nothing. What I think most people are doing is simply being a part of something where you're communicating with others to move forward a good cause.
The pessimism that comes with criticisms of the challenge are really disheartening.... and annoying.
If I can do something nice for someone else - whether a small kindness or something larger - why not? Stroking our egos from time to time (or at least giving it an eskimo kiss) is part of being human. Not a big price to pay if something good comes from it.
(I'll also say this - my eyes have definitely been opened by the personal accounts I've read, whether here or elsewhere, and how this campaign has affected them. Humbling, for me.)
Right. It's guilt. Looking to be stroked. Whatever but always for givers self interest not the receiver. It's not a bad thing. Just is. This particular challenge just plays into this human need.
Giving up your seat - did you think twice when you did it?
When I hold the door for someone, give a few bucks to someone who needs it, letting a person ahead of me in line at the market...sure I feel good doing it during and after, but that's not necessarily or always the impetus.
In the end, it's a positive and hopefully a ripple-effect.