Ice Bucket Challenge, Ribbons, Wrist Bands, etc....
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In 1998 my Aunt Connie was diagnosed with ALS...she was my mother's best friend and a dear sweet person to everyone who knew her. They grew up together and did everything together....including traveling to Denmark for the birth of my first child. Watching her go from such a hard working nurse and mother....to loosing complete control of her body----slowly each day something getting weaker or an ability she had completely going away was hands down the cruelest disease I have ever seen in 'action.' Her mind was completely intact, as her body became a worthless shell. My mom began helping out around her home....as as the weeks and months went by she did more and more until she was there permanently. From beginning to end was only a year...and by the time the disease had played out, her death was almost welcomed.
I had never heard of ALS before her diagnosis....and since her death I have never seen an ad....a campaign...a fund raiser or anything else for it. For now, it is the time for ALS to get it's 15 minutes of fame and while I understand there are thousands upon thousands of awful illnesses in the world that need money, research and development as well as our awareness I can not find it in my heart to begrudge the charities the attention this trend is raising! If you don't want to donate money to ALS, you can still do the challenge and bring AWARENESS to the disease....and have fun in the process. As for this trend reminding those of us who have been down that ALS road...well---all *I* can say is that every time I see someone post the challenge and dump a bucket of ice water on their head, I remember of my dear Aunt Connie and have hopes that one day another family won't have to go through what her family did. I wouldn't wish it on anyone.0 -
It's slactivism. It makes people feel like they're doing something good for the world and they're really not. I can understand buying things that contribute directly to an organization that you would like to support, I have several HRC stickers on the back of my car right now. But the ice bucket challenge seems like a cop-out. I respect the fact that it brings awareness to the issue, but I think it should be coupled with a donation to the charity not just doing the "challenge."
Um, it IS coupled with donation to the charity. The ALS has raised $15.6 million as a result of the challenge which is nine times what would normally be raised in that time frame.
A friends mom has ALS and said friend is very happy with the challenge, the awareness it is bringing and the money that is being raised.0 -
ALS is usually Lyme Disease and I'm frustrated when good donation money and media hype go toward causes that aren't Lyme -which is effectively being totally ignored. Maybe it's because I'm selfish and want to be recognized by friends, family, doctors, the world. Or maybe I'm tired of watching friends die, commit suicide because there seems to be no hope or help, dealing with pain day in and day out. I can't even begin to describe the hell ....
Go to YouTube, watch Under Our Skin.
You'll see many commonly mis-diagnosed conditions in there: ALS, Fibromyalgia, Chronic Fatigue, Multiple Sclerosis, Parkinson's, depression and mental health disorders... the list is long.
It's nice to know that people do care about issues. I just wish the public could begin to understand the severity and complexity of Lyme Disease & co-infections.
Unless I am misreading what you wrote, every disease out there is Lyme disease?:huh:0 -
ALS is usually Lyme Disease and I'm frustrated when good donation money and media hype go toward causes that aren't Lyme -which is effectively being totally ignored. Maybe it's because I'm selfish and want to be recognized by friends, family, doctors, the world. Or maybe I'm tired of watching friends die, commit suicide because there seems to be no hope or help, dealing with pain day in and day out. I can't even begin to describe the hell ....
Go to YouTube, watch Under Our Skin.
You'll see many commonly mis-diagnosed conditions in there: ALS, Fibromyalgia, Chronic Fatigue, Multiple Sclerosis, Parkinson's, depression and mental health disorders... the list is long.
It's nice to know that people do care about issues. I just wish the public could begin to understand the severity and complexity of Lyme Disease & co-infections.
Unless I am misreading what you wrote, every disease out there is Lyme disease?:huh:
Yeah ... I kinda skipped right on past this one.
There is so much hateful backlash to this fundraiser. The one I saw today is a guy basically whining that ALS is getting too much money so other charities aren't getting any at all. Or something.
So this is bad because it's raising too much money for the intended charity.0 -
ALS is usually Lyme Disease and I'm frustrated when good donation money and media hype go toward causes that aren't Lyme -which is effectively being totally ignored. Maybe it's because I'm selfish and want to be recognized by friends, family, doctors, the world. Or maybe I'm tired of watching friends die, commit suicide because there seems to be no hope or help, dealing with pain day in and day out. I can't even begin to describe the hell ....
Go to YouTube, watch Under Our Skin.
You'll see many commonly mis-diagnosed conditions in there: ALS, Fibromyalgia, Chronic Fatigue, Multiple Sclerosis, Parkinson's, depression and mental health disorders... the list is long.
It's nice to know that people do care about issues. I just wish the public could begin to understand the severity and complexity of Lyme Disease & co-infections.
Unless I am misreading what you wrote, every disease out there is Lyme disease?:huh:
I intentionally ignored this one. For good reason.0 -
'charity' is big big business0
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Not sure how the whole thing works. If you are called out, you have to donate or get drenched?
I know lots of people, including my own family, that are challenging each other to the Ice Bucket Challenge, but not donating a cent.
I think it's just a "hey! Look at me" game to them.0 -
You are supposed to donate either way. You're "allowed" to donate less if you do the ice water.Not sure how the whole thing works. If you are called out, you have to donate or get drenched?
I know lots of people, including my own family, that are challenging each other to the Ice Bucket Challenge, but not donating a cent.
I think it's just a "hey! Look at me" game to them.0 -
Not sure how the whole thing works. If you are called out, you have to donate or get drenched?
I know lots of people, including my own family, that are challenging each other to the Ice Bucket Challenge, but not donating a cent.
I think it's just a "hey! Look at me" game to them.
Depending on what you read, it's supposed to be $10 + Ice Bucket, or $100 and no Ice Bucket. However, most of the people I know doing it, are doing both $100 + the Ice Bucket.
Now, if someone can not afford to donate, simply dumps ice water on themselves, and challenges 3 others do do the challenge, so be it. It's still raising awareness and motivating others to donate. And it's working... and it's the cheapest fundraising challenge with no overhead, so bring it on.0 -
Exactly!!!!!!!! My brother has ALS he is 31 he was 28 when diagnosed! I only knew it has an old mans disease. Since then when I tell people my brother has ALS they STILL think he can get better. Well people he CAN'T! There is no treatment at all! So I am sorry the Ice Bucket Challenge has had it's 15 minutes of fame. However for the first time in in 75+ years someone with ALS was able to get people talking about it.
In a few weeks everyone will go back to cats and putting themselves on fire on facebook...until then! Participate and Donate!
www.hopeforsteve.com
www.als.net0 -
ALS is usually Lyme Disease and I'm frustrated when good donation money and media hype go toward causes that aren't Lyme -which is effectively being totally ignored. Maybe it's because I'm selfish and want to be recognized by friends, family, doctors, the world. Or maybe I'm tired of watching friends die, commit suicide because there seems to be no hope or help, dealing with pain day in and day out. I can't even begin to describe the hell ....
Go to YouTube, watch Under Our Skin.
You'll see many commonly mis-diagnosed conditions in there: ALS, Fibromyalgia, Chronic Fatigue, Multiple Sclerosis, Parkinson's, depression and mental health disorders... the list is long.
It's nice to know that people do care about issues. I just wish the public could begin to understand the severity and complexity of Lyme Disease & co-infections.
Wow misinformed much? I think you need to visit my brother who has ALS and my friend who has Lyme Disease and see the HUGE difference!0 -
You are supposed to donate either way. You're "allowed" to donate less if you do the ice water.Not sure how the whole thing works. If you are called out, you have to donate or get drenched?
I know lots of people, including my own family, that are challenging each other to the Ice Bucket Challenge, but not donating a cent.
I think it's just a "hey! Look at me" game to them.
Thanks. I hope that's how it is working out, but I think a lot of the people I have seen are just using it to drench their friends. On the other hand, if the notoriety is bringing in money for a good cause then it's worth it.0 -
Nah...I agree with you...and so did my mother-in-law, before she passed away from her third bout with breast cancer that left her paralyzed and miserable. She was SO effing angry at the pink ribbon hordes, who in her view did more for their own self-esteem than people actually living and dying with the disease. I get that some of this stuff does raise funds and awareness but for the most part it just seems like a gigantic faddish masturbatory show of "support"...I prefer to donate quietly and volunteer in ways that touch lives directly.0
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I prefer to donate quietly
Does your $100 donation somehow do more for something than someone else's because you did it quietly?0 -
Exactly!!!!!!!! My brother has ALS he is 31 he was 28 when diagnosed! I only knew it has an old mans disease. Since then when I tell people my brother has ALS they STILL think he can get better. Well people he CAN'T! There is no treatment at all! So I am sorry the Ice Bucket Challenge has had it's 15 minutes of fame. However for the first time in in 75+ years someone with ALS was able to get people talking about it.
In a few weeks everyone will go back to cats and putting themselves on fire on facebook...until then! Participate and Donate!
www.hopeforsteve.com
www.als.net
Serious question. If there is no cure for ALS, is the monies being donated for research or support for individuals with ALS? Or, hopefully, both?
Just curious. My brother died of AIDS. Towards the end, he did manage to get financial support from various AIDS foundations, but, other than awareness, there is still no cure for AIDS.0 -
They're researching cures. There have been a lot of recent breakthroughs in both diseases.Exactly!!!!!!!! My brother has ALS he is 31 he was 28 when diagnosed! I only knew it has an old mans disease. Since then when I tell people my brother has ALS they STILL think he can get better. Well people he CAN'T! There is no treatment at all! So I am sorry the Ice Bucket Challenge has had it's 15 minutes of fame. However for the first time in in 75+ years someone with ALS was able to get people talking about it.
In a few weeks everyone will go back to cats and putting themselves on fire on facebook...until then! Participate and Donate!
www.hopeforsteve.com
www.als.net
Serious question. If there is no cure for ALS, is the monies being donated for research or support for individuals with ALS? Or, hopefully, both?
Just curious. My brother died of AIDS. Towards the end, he did manage to get financial support from various AIDS foundations, but, other than awareness, there is still no cure for AIDS.
There have been a couple instances where AIDS was cured through bone marrow transplant, BTW.0 -
I prefer to donate quietly
Does your $100 donation somehow do more for something than someone else's because you did it quietly?
Nah I didn't mean that.
Honestly I do understand the hype surrounding some of these big events because that they raise a lot of money, which is great. But I stand by my comment about the people donning colorful t-shirts & wristbands often just doing it for show or because someone in their workplace suggested they do a walk...I've known so many people like that, who really had no interest in raising funds but saw it as a social thing and a way to have some photos on social media to show how they're so charitable and a real "activist"...that's the kind of attitude I'm shunning and trying to relate with OP on that level.
When I said "donate quietly" I just meant...for example if someone I know well is doing a walk/run/fundraiser, I would rather just give them a cash donation directly or do an anonymous donation to their team online. It leaves a bad taste in my mouth to brag about how much I donated (which isn't a ton, granted) although I DO see the flip side of telling others which causes you support and possibly gaining more supporters that way. It's just not my style. Same with volunteer work...I would rather do something that seems not so glamorous or fun but benefits people in some way, every single week/month, than go once a year to a charity gala to get a photo in the regional magazine proving to my business network how much I support X, Y, or Z.0 -
Yay! People wasting a bunch of water for a disease they'd have to Google to know anything about when people in other countries are showering, pissing, and drinking from the same mudhole.0
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So you're saying that if we didn't do this challenge that those people would all suddenly have plenty of clean water and no more poverty? You're saying the ice bucket challenge is taking away their clean water?Yay! People wasting a bunch of water for a disease they'd have to Google to know anything about when people in other countries are showering, pissing, and drinking from the same mudhole.
And also, you're saying that since many people may not have previously known what ALS is, that now they've been made aware of it and maybe did Google and now they know, that this is a bad thing? That the charity doesn't deserve the money?
I mean, if I'm reading right, that's what I see you're saying.
And for the record, I have known what ALS is, what it does and how awful it is to have it for as long as I can remember and I'm going to do the challenge. No googling necessary. So am I allowed to do it? Is it OK for me to donate some money and have a little fun in the meantime since I already know what it is? Please tell me I have your permission and acceptance.
And maybe I'll also send a bucket of clean water to some impoverished country to even things out.0
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