ALS donations only 27% going to research

[john s]

So the ice bucket challenge has been all around my Facebook lately. It's awesome that so many people got involved for such a great cause. But today if this is true it's sickening that out of the 100 million they have already received only 27% goes to research.

ICE BUCKET FRAUD: ALS FOUNDATION ADMITS THAT 73% OF DONATIONS ARE NOT USED FOR ALS RESEARCH


Sent from my iPhone while wishing the snow was gone so I can go dirt biking.

 

[Cat401]

Claim: Most of the $100 million raised from ALS 'Ice Bucket Challenge' donations won't go to ALS-related research and services.




FALSE



Examples: [Collected via e-mail, August 2014]


Received the message below on FB from a friend after I completed the ALS Ice Bucket Challenge. Just wondering if this is true and how their spending compares to other charities. We've been duped. America is filled with fun-loving and caring people. The viral ice bucket challenge has combined both our sense of responsibility to our fellow human with fun. And it has been fun! Who didn't love seeingSarah Palin doused?

But wait? Ice Bucket Challenge donations are nearing $100 MILLION. Where is that money going? According to the ALS Foundation, not towards ALS. Over 73% of all donations raised are going to fundraising, overhead, executive salaries, and external donations. Less than 27% is actually used for the purpose we donated for. According to the ECFA, a charitable watchdog, 27% of donations actually making it to the cause they are donated to is unacceptable.



Origins: The email quoted above and other versions of it began to circulate on 28 August 2014, with widespread social media concern over the fate of 'Ice Bucket Challenge' funds donated to the ALS following shortly thereafter.

On 27 August 2014, The ALS Association posted a press release confirming that the organization had received $94.3 million in donations between 29 July and 27 August 2014 due to the popularity of the Ice Bucket Challenge. In the release, Barbara Newhouse, President and CEO of The ALS Association, addressed the large infusion of funds and the organization's sudden social media fame:


The ALS Association has been given a great deal of money and with that comes tremendous responsibility ... We are absolutely committed to transparency and will be communicating regularly with the ALS community, our donors, the media and the public about progress to invest these dollars wisely in areas that will have maximum impact on the fight against this devastating disease.



Given the large amount of cash suddenly flowing in the direction of The ALS Association, it's natural that a public questioning of sorts would follow. After all, not every charity is well administrated, and not every cause is free of bad actors who would exploit public interest for financial gain.

Services such as the Charity Navigator web site can be helpful in diffusing concerns in a situation such as the Ice Bucket Challenge phenomenon. According to the site, the ALS Association has a record of high transparency and ranks high in other areas, receiving four out of four stars overall.

The claim made in the email above, that 73 percent of donations fund executive salaries and overhead, is demonstrably false. In their 2014 disclosures, The ALS Association reports a breakdown of their expenditures — only seven percent of their total fund intake goes to administration and salaries. Of the remaining 93 percent of funds, 32 percent is allocated to professional and public education, 28 percent goes directly to research, 19 percent is marked for patient and commmunity services, and 14 percent is allocated to fundraising.

The ALS Association's most recent fiscal year reporting is available on their website, with more detailed reports linked on the same page.

Read more at snopes.com: Where Do ALS Ice Bucket Challenge Donations Go?

 

[fnDan]

Could be true and may not be.
I don't recall anyone from ALS saying that all or even 80% of the donations were going directly to research. The donations are going to ALS which by looking at the chart, looks like legitimate operations for a large charitable organization. Those numbers also appear to be last years financial results which would not account for the money that has been raised as a result of the ice bucket challenge this year. The pie chart adds up to about 26 million which could be the total operating costs for the previous year. I don't think it's a good idea to base decisions on one report. You just never know what the agenda of the originator is. It could be to generate hits on a website by raising peoples suspicions on something so viral and an easy target. Now you have to check out the organization they list and see if it's legitimate.


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[john s]

Sorry Cat401 I didn't want to come across as an a-hole. I have family and friends who have taken part in this. I thought it was an Interesting read and from maybe a credible source. So is that fake then I don't understand wy it would be faked?


Sent from my iPhone while wishing the snow was gone so I can go dirt biking.

 

[Captjacksparrow]

It says in the that Snopes article that only 28% goes to research and the wages % is way higher when you factor in travel, accounting and employee's expenditures etc. That puts it at like 40 plus %. Here's a break down of the top brass wages:
Jane H. Gilbert – President and CEO – $339,475.00
Daniel M. Reznikov – Chief Financial Officer – $201,260.00
Steve Gibson – Chief Public Policy Officer – $182,862.00
Kimberly Maginnis - Chief of Care Services Officer – $160,646.00
Lance Slaughter - Chief Chapter Relations and Development Officer – $152,692.00
Michelle Keegan – Chief Development Officer – $178,744.00
John Applegate – Association Finance Officer – $118.726.00
David Moses – Director of Planned Giving – $112,509.00
Carrie Munk – Chief Communications and Marketing Officer – $142,875.00
Patrick Wildman – Director of Public Policy – $112,358.00
Kathi Kromer – Director of State Advocacy – $110,661.00

Those wages are ridiculous for employee's of a non profit organization. I'm not saying don't donate, it's a worthy cause and 28% for research is still better than nothing, but they could appropriate funds a lot better. They have terrible rating with the charity watch dogs also!

 

[Wilk INStheWEST]

I for one have a serious issue with this whole Ice Bucket Challenge. Basically it has been a giant Advertisement, and peer pressuring to give your hard earned dollars to something, which may not be the best cause to be giving your money to. I'm not saying it's a bad cause, it is an excellent cause, but ALS is rare disease, and isn't in the top 20 in terms of number of fatalities a year. To give your money to it, just because somebody else has told you to is a little ridiculous. "If you don't do the challenge you have to donate $100" is complete crap. The charity shouldn't be dictating how much people should be donating. I went to the ALS Canada website to try to figure out more info about ALS (isn't that what this is all about, to raise awareness), and I had the hardest time finding any information on the disease. I will be donating to a neurological disease foundation (Branch Out Foundation, which is run by a friend of mine who is currently living with MS), but it won't be ALS Canada, and it won't be for 100$. I make most of my yearly charitable donations to Heart and Stroke, and Cancer because those are the diseases that affect the most number of people (and have affected by family) and kill the most people every year. If you look at the amount of dollars raised per death by the disease, ALS is now the most funded disease by death. In Canada, they have raised approximately $45000 per death (by year), where as Heart disease usually gets less than $100 per death.
I'm not saying don't donate to the cause, but to just think about it and where your hard earned money is going, and if it is the best cause. I'm wondering how this campaign for ALS is going to effect the donations made to other causes. Because people have already given to this, are they less likely to give to something like the Ride to Conquer Cancer (where someone is actually working their butt off and doing something difficult for donations)

Looking at those salaries above, looks like Carrie Munk will be getting a good bonus next year for her viral marketing efforts with this campaign, as this campaign has quadrupled donations to ALS so far this year.

 

[Carrots]

It says in the that Snopes article that only 28% goes to research and the wages % is way higher when you factor in travel, accounting and employee's expenditures etc. That puts it at like 40 plus %. Here's a break down of the top brass wages:
Jane H. Gilbert – President and CEO – $339,475.00
Daniel M. Reznikov – Chief Financial Officer – $201,260.00
Steve Gibson – Chief Public Policy Officer – $182,862.00
Kimberly Maginnis - Chief of Care Services Officer – $160,646.00
Lance Slaughter - Chief Chapter Relations and Development Officer – $152,692.00
Michelle Keegan – Chief Development Officer – $178,744.00
John Applegate – Association Finance Officer – $118.726.00
David Moses – Director of Planned Giving – $112,509.00
Carrie Munk – Chief Communications and Marketing Officer – $142,875.00
Patrick Wildman – Director of Public Policy – $112,358.00
Kathi Kromer – Director of State Advocacy – $110,661.00

Those wages are ridiculous for employee's of a non profit organization. I'm not saying don't donate, it's a worthy cause and 28% for research is still better than nothing, but they could appropriate funds a lot better. They have terrible rating with the charity watch dogs also!

With wages like that why would they even want to find a cure, then they would all be out of jobs

 

[Wilk INStheWEST]

People REALLY need to get their facts straight before posting crap that hurts reputations....according to Snopes, only 7% goes to admin & salaries. 93% goes to ALS...see below for breakdown...
Claim: Most of the $100 million raised from ALS 'Ice Bucket Challenge' donations won't go to ALS-related research and services.




FALSE
In their 2014 disclosures, The ALS Association reports a breakdown of their expenditures — only seven percent of their total fund intake goes to administration and salaries. Of the remaining 93 percent of funds, 32 percent is allocated to professional and public education, 28 percent goes directly to research, 19 percent is marked for patient and commmunity services, and 14 percent is allocated to fundraising.

If you are going to call people out, maybe you shouldn't contradict yourself and then confirm what the other person is saying in your own post.
The OP is saying that only 27% is actually going to research, and then you put this whole post together saying that is not true, then confirm that only 28% is going directly to research.

 

[Snowdin]

This ride to conquer cancer crap is in the same league as the ice bucket challenge IMO. It's all about making some wallets fatter. I quit donating to cancer research years ago. With all the billions many billions cancer researchers have collected over the years and all they can do is continue to drip the most toxic drug in the world into all ready sick peoples veins. I call bull. There is way to many people living off the fund raising band wagon for them to come forth with a cure.

 

[Wilk INStheWEST]

This ride to conquer cancer crap is in the same league as the ice bucket challenge IMO. It's all about making some wallets fatter. I quit donating to cancer research years ago. With all the billions many billions cancer researchers have collected over the years and all they can do is continue to drip the most toxic drug in the world into all ready sick peoples veins. I call bull. There is way to many people living off the fund raising band wagon for them to come forth with a cure.

I agree with the people living off of charitable foundations (just look at the salaries above). I used the Ride to Conquer Cancer as an example, that I will donate to someone who is doing it, because they are going to bike 200km in exchange for your donation. It's not just a peer pressure thing, that someone said my name on Facebook, so now I have to donate.

 

[Iron Horse Racing]

This is from the ALS web site, wish all the facts would come out so people get the whole story.....does all the money go to reaseach ....the answer no, ask the real queation..... where does all the money go?

 

[Snowdin]

And half the money spent on research is ear marked for "fundraising" Really? I know it cost money to advertise in magazines and newspapers but that much? FB and Twitter is free and they must have sucked a whack of dough out of pockets from these venues.

 

[Steve D]

Hate to break it to you guys, but that old adage - gotta spend money to make money - applies to charities as well. People's time is not worthless, especially the large scale operations. You can't just dump buckets of money on scientists lawns and say "fix it". As it is broken down, EDUCATION gets 32% - this is training professionals to diagnose and treat the disease, as well as public education so that people can learn what it's all about. And finally, patient services - this is the part of the charity that helps the people that have the condition today. Research only helps the people tomorrow. That 51% is going to helping people today is huge - as anyone that has seen a loved one, or themselves, get help with a condition can attest to.

And remember, these percentages were based on money they got last year. Administration costs are pretty much a fixed number so that percentage will be much smaller in the next report, whereas the other areas will be bigger thanks to this. The numbers don't lie, but you have to interpret them properly too.

These shock stories that circulate via facebook piss me off - I'm constantly arguing with relatives about the lies they propagate. Yes, people get paid -omg so terrible- but you are not going to find fully qualified people willing to work for peanuts full time. I spent 6 years in university, I'm not going to go house to house fixing peoples computers for a cup of coffee and a pat on the back. It's how the real world works.

For every good thing that happens out there, there is someone that's ready to drop a bucket of piss on their parade.

 

[Wilk INStheWEST]

Hate to break it to you guys, but that old adage - gotta spend money to make money - applies to charities as well. People's time is not worthless, especially the large scale operations. You can't just dump buckets of money on scientists lawns and say "fix it". As it is broken down, EDUCATION gets 32% - this is training professionals to diagnose and treat the disease, as well as public education so that people can learn what it's all about. And finally, patient services - this is the part of the charity that helps the people that have the condition today. Research only helps the people tomorrow. That 51% is going to helping people today is huge - as anyone that has seen a loved one, or themselves, get help with a condition can attest to.

And remember, these percentages were based on money they got last year. Administration costs are pretty much a fixed number so that percentage will be much smaller in the next report, whereas the other areas will be bigger thanks to this. The numbers don't lie, but you have to interpret them properly too.

These shock stories that circulate via facebook piss me off - I'm constantly arguing with relatives about the lies they propagate. Yes, people get paid -omg so terrible- but you are not going to find fully qualified people willing to work for peanuts full time. I spent 6 years in university, I'm not going to go house to house fixing peoples computers for a cup of coffee and a pat on the back. It's how the real world works.

For every good thing that happens out there, there is someone that's ready to drop a bucket of piss on their parade.

I think people are just surprised at how low the percentage is (and that really is what that article above is about, just pointing out that in the EU a foundation can only be classified as non-profit if more than 80% is going to research, and suggesting donating to a foundation that may have a higher percentage), and then add in the fact that the ALS foundation has said that they don't know what to do with all this extra money they have.... Most people are probably expecting the extra to just go into research right away. That is obviously not how it works. They have a budget for this year, and they will stick to it. But to say they don't know what to do with the money was a little odd.

I would really like to see a breakdown between Professional and Public Education, because that is where I am having some serious issues with these numbers.

 

[somethingnuw]

So the ice bucket challenge has been all around my Facebook lately. It's awesome that so many people got involved for such a great cause. But today if this is true it's sickening that out of the 100 million they have already received only 27% goes to research.

ICE BUCKET FRAUD: ALS FOUNDATION ADMITS THAT 73% OF DONATIONS ARE NOT USED FOR ALS RESEARCH




Sent from my iPhone while wishing the snow was gone so I can go dirt biking.

Always good to be open minded of these frauds... thanks for the Post... info is important and proves we always need to keep asking the hard questions...

HOWEVER TO EVERYONE>.. my mentor and good friend was diagnosed with ALS 3 years ago and given 2 years to live.... HE IS A HUGE BELIEVER IN THE ICE BUCKET CHALLANGE... Please keep the money coming in... THE ALS Society has helped him a lot... its a very scary disease that can hit at anytime... the society has been a huge help to him and his family

 

[somethingnuw]

I think people are just surprised at how low the percentage is, and then add in the fact that the ALS foundation has said that they don't know what to do with all this extra money they have.... Most people are probably expecting the extra to just go into research right away. That is obviously not how it works. They have a budget for this year, and they will stick to it. But to say they don't know what to do with the money was a little odd.

I would really like to see a breakdown between Professional and Public Education, because that is where I am having some serious issues with these numbers.

I hear the cancer people work the same... i've heard they bank the extra and do research with the money they make off the bank... but at least someone is doing research... not just leaving it up to private pharmacy companies that make huge money off 1970's technology in chemo ???!!

 

[Wilk INStheWEST]

I hear the cancer people work the same... i've heard they bank the extra and do research with the money they make off the bank... but at least someone is doing research... not just leaving it up to private pharmacy companies that make huge money off 1970's technology in chemo ???!!

That's exactly what I meant by it being weird for a foundation like that to not know what to do with the extra money! Put it in the bank and fund more research in the future. Put some extra money in the budget to give more money to your current researchers that are doing a good job, find more worthy researchers to do further research (that obviously isn't going to happen overnight).

 

[Steve D]

When they say "we don't know what to do with it" you can interpret that as "this is a lot more than we projected our budgets for, we have a number of researchers who are already funded but might need more, and we may take on new researchers to look at more stuff. Maybe we need to look at how we can assist people with ALS by paying for medications, maybe we can train more physical therapists in regions that are lacking, or maybe we need to spend a little bit to help all the people suddenly asking "what is ALS?" Maybe a chunk should go to fundraising so that next year we can try to keep the momentum on this thing going? Maybe we bank a bunch for the lean years?"

There's lots of good questions as to what to do with the money, and to answer them all at a snap of the fingers would be more foolish than taking the time to plan this out.

 

[Wilk INStheWEST]

When they say "we don't know what to do with it" you can interpret that as "this is a lot more than we projected our budgets for, we have a number of researchers who are already funded but might need more, and we may take on new researchers to look at more stuff. Maybe we need to look at how we can assist people with ALS by paying for medications, maybe we can train more physical therapists in regions that are lacking, or maybe we need to spend a little bit to help all the people suddenly asking "what is ALS?" Maybe a chunk should go to fundraising so that next year we can try to keep the momentum on this thing going? Maybe we bank a bunch for the lean years?"

There's lots of good questions as to what to do with the money, and to answer them all at a snap of the fingers would be more foolish than taking the time to plan this out.

You can interpret it that way, but they are a foundation that has just raised over $100 Million dollars. Maybe have one of their high paid marketing execs to come up with a more political way of saying it. You just proved that it could have been said more tactfully, and that probably took you less than 5 minutes to come up with.

 

[Snowdin]

Steve D I've been pissing on big Pharma and medical's parade for years. Why. Because I found out years ago there are alternative measures to deal with these disease's we have been faced with for many years. Every year medical pull herbs from the shelves of health food stores. They say it's because the common person does not have enough medical know how to administer these herbs. But really it's because the herbs are curing people and big pharma can't make hoards of money because they can not patent herbs.

Let's face it. Cancer and all the other things that are killing people is a multi multi billion dollar business. Cancer is curable. I'm living proof and I won't say anymore about it on a public forum. Medical has been trying to shut down the people who have helped me for years. That's why I love to piss on their parade.