Ice Bucket Challenge, Ribbons, Wrist Bands, etc....

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."

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:

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.

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.

You are supposed to donate either way. You're "allowed" to donate less if you do the ice water.

I prefer to donate quietly

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.

I prefer to donate quietly

Does your $100 donation somehow do more for something than someone else's because you did it quietly?

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.

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.

My friend has a foundation and she sells wrist bands, bandanas, bumper stickers and T-shirts to raise money. She can buy everything but the T-shirts for about $1 and sell them for $5. That's a 500% profit for her foundation, which is very small, all volunteer and all money raised goes toward helping break cycles of dysfunction in families. So, I don't think she cares why people buy and wear those things, only that they do.

Most of the people I have seen post videos have not said how much they are donating, so in what way are they bragging?

While I have been aware of ALS for as long as I can remember and know plenty about it, it isn't a cause that has been at the forefront of my mind. Now I know how underfunded research has been, and despite that, I know the kinds of breakthroughs have been made. Imagine what they can do with more money, which this campaign has brought them in droves.

And if you have a breakthrough for one neurological disorder, you can use it to help people with other neurological disorders, so not only ALS benefits from this.

Quit trying to make people doing a good thing feel bad about it just because it isn't how you would do it.

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.

My friend has a foundation and she sells wrist bands, bandanas, bumper stickers and T-shirts to raise money. She can buy everything but the T-shirts for about $1 and sell them for $5. That's a 500% profit for her foundation, which is very small, all volunteer and all money raised goes toward helping break cycles of dysfunction in families. So, I don't think she cares why people buy and wear those things, only that they do.

Most of the people I have seen post videos have not said how much they are donating, so in what way are they bragging?

While I have been aware of ALS for as long as I can remember and know plenty about it, it isn't a cause that has been at the forefront of my mind. Now I know how underfunded research has been, and despite that, I know the kinds of breakthroughs have been made. Imagine what they can do with more money, which this campaign has brought them in droves.

And if you have a breakthrough for one neurological disorder, you can use it to help people with other neurological disorders, so not only ALS benefits from this.

Quit trying to make people doing a good thing feel bad about it just because it isn't how you would do it.

The whole point of this thread was the OP asking if others have felt emotionally hijacked by these fundraisers and awareness efforts. And the answer, despite many comments to the contrary, is yes. SOME people share OP's feelings.

I'm not here to debate the validity of charity organizations or profitability of fundraisers or "try to make people feel bad".
I don't think every person wearing their arm band and t-shirt to support (insert disease here) has their heart in the wrong place. Some do, some don't. Whatever.

I'm here to share my *feelings* on this topic with the OP. And I know that for some people all of the very public stuff makes them feel (in the words of OP) emotionally hijacked. There are guys out there who lose their mom to breast cancer and have pink ribbon decals all over their cars and tattooed on their bodies. Does that mean they loved their moms more than my husband loved his? No. But we're told many times that "this is what grief and healing looks like"...people running in pink t-shirts to raise awareness. It doesn't look the same for everyone.

I'm done with this because I'm really not interested in debating or arguing, when it comes to peoples' feelings there's no point driving home the statistics of a successful awareness campaign. I was just trying very hard to share an unpopular point of view.

So, you don't like people telling you how you should grieve, how you should respond to tragedy or how you should support a cause, but you're complaining about how others do it?

You're upset that someone else dealt with losing his mother by putting ribbons on his car because somehow that makes you think you have to?

You know what makes me feel "emotionally hijacked"? My friend who sis 38 with a wife and two children who got diagnosed with ALS last year.

I'm so sorry you feel bad about people pouring ice over their heads. I'm sure that is comforting to the people suffering.

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.

My friend has a foundation and she sells wrist bands, bandanas, bumper stickers and T-shirts to raise money. She can buy everything but the T-shirts for about $1 and sell them for $5. That's a 500% profit for her foundation, which is very small, all volunteer and all money raised goes toward helping break cycles of dysfunction in families. So, I don't think she cares why people buy and wear those things, only that they do.

Most of the people I have seen post videos have not said how much they are donating, so in what way are they bragging?

While I have been aware of ALS for as long as I can remember and know plenty about it, it isn't a cause that has been at the forefront of my mind. Now I know how underfunded research has been, and despite that, I know the kinds of breakthroughs have been made. Imagine what they can do with more money, which this campaign has brought them in droves.

And if you have a breakthrough for one neurological disorder, you can use it to help people with other neurological disorders, so not only ALS benefits from this.

Quit trying to make people doing a good thing feel bad about it just because it isn't how you would do it.

The whole point of this thread was the OP asking if others have felt emotionally hijacked by these fundraisers and awareness efforts. And the answer, despite many comments to the contrary, is yes. SOME people share OP's feelings.

I'm not here to debate the validity of charity organizations or profitability of fundraisers or "try to make people feel bad".
I don't think every person wearing their arm band and t-shirt to support (insert disease here) has their heart in the wrong place. Some do, some don't. Whatever.

I'm here to share my *feelings* on this topic with the OP. And I know that for some people all of the very public stuff makes them feel (in the words of OP) emotionally hijacked. There are guys out there who lose their mom to breast cancer and have pink ribbon decals all over their cars and tattooed on their bodies. Does that mean they loved their moms more than my husband loved his? No. But we're told many times that "this is what grief and healing looks like"...people running in pink t-shirts to raise awareness. It doesn't look the same for everyone.

I'm done with this because I'm really not interested in debating or arguing, when it comes to peoples' feelings there's no point driving home the statistics of a successful awareness campaign. I was just trying very hard to share an unpopular point of view.

So, you don't like people telling you how you should grieve, how you should respond to tragedy or how you should support a cause, but you're complaining about how others do it?

You're upset that someone else dealt with losing his mother by putting ribbons on his car because somehow that makes you think you have to?

You know what makes me feel "emotionally hijacked"? My friend who sis 38 with a wife and two children who got diagnosed with ALS last year.

I'm so sorry you feel bad about people pouring ice over their heads. I'm sure that is comforting to the people suffering.

Like I said, I'm done with this conversation. We are clearly not on the same page whatsoever.

If you're going to donate to a cause, just do it... You don't have to do some silly challenge. A true act of kindness is one where someone doesn't seek recognition.