ALS Ice Bucket Challenge
Pap
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Athens 2006 / Milton Keynes 2014 / London 1&2 2022 / Seattle 1&2 2024 / Dublin 2024 / Manchester 2024
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Pap
Posts: 28,999
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"...I changed by not changing at all..."
"...I changed by not changing at all..."
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.
http://www.cbc.ca/news/canada/cancer-society-spends-more-on-fundraising-than-research-1.1080909
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.
http://www.vice.com/read/the-worst-part-of-the-ice-bucket-challenge-is-the-people-criticizing-it-822
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"m sure you've all seen this already, but if you haven't....
This made me laugh....Josh Homme
I do think many of these have been taken over by ego (yet another "look at me!" moment), but - and assuming the funds ARE put to their intended use - I can deal with that if it will help bring about treatment at the least and a cure at the most.
My father worked for the City of Hope for 27 years, and he was not well-paid by any means. No one there was. The fundraising he supervised went not only to researching cancer and treatment but also toward the families of those with cancer (much like Ronald McDonald House).
Again, really hope these donations - these generous donations - do much good. This is a fucked up disease that steals precious parts of people and by proxy, those who love them.
I hope the pharma companies feel the same way. Profit isn't measured only by money.
It's a social media campaign that became bigger than anyone expected. And the success of it is That most of us know more about this horrible disease now, and a great deal of money has been raised for a great cause.
Peace
I think it would have been better for the money to be raised locally and split up amongst ALS patients to with as they please, not give the money to some charity.
And I disagree that people running charities need to be compensated, there are plenty of people that would volunteer in all key levels of a charity that could help run charities.
"Life Is What Happens To You When Your Busy Making Other Plans" John Lennon
I guess some people just like to complain
And, I hope it's not just pharmas doing the "research" but also those who honestly, selflessly, want this shit to end already.
Life lived in pain, fading dignity and loss of independence...not much of a life - quality of life.
So let's all flush the toilet one less time today and we call all rest easy. :P
"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 can think of a 1,000 other things that piss me off more than the ice bucket challenge.