ALS ice challenge
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28-08-2014, 09:56 PM
RE: ALS ice challenge
(28-08-2014 11:57 AM)Revenant77x Wrote:  
(28-08-2014 11:46 AM)Metazoa Zeke Wrote:  If you ask me this has to be the best way to make money for a charity yet. Why? Because they used a fad. Once celebrities did it, all the teens would do it because they want to be cool. All the adults would do it because they realize that once they do they might be cool like the teens, and kids do it because they feel they can be like teens. This is the best idea for a charity I have seen yet, maybe more charities should use fads for money.

This was a luck thing. This being tied to a charity was wholly by chance (see all the internet challenges that are not) so it took a silly viral video trend and actually got some good out of it. However trying to make something go viral is very difficult. A charity trying to manufacture the "Next Ice Bucket Challenge" will probably fall flat.

That is true. If they do another one it has to be something that celebrities will do, once they do it everyone is doing it. You know stupid teens. Tongue

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29-08-2014, 09:50 AM
RE: ALS ice challenge
I actually have an idea that I'll be sharing with the Florida ALSA chapter, but I would be shocked if it performed a tenth as well as the Ice Bucket Challenge.

In other news, the association put out an FAQ that specifically addressed some of the topics that were being debated here on this thread.

You can read the entire FAQ here: http://www.alsa.org/about-us/ice-bucket-...e-faq.html

But I wanted to quote the specific items in question, as they answered the concerns in a more thorough manner than they did in my e-mail exchange with their national office.

Quote:How much money does The ALS Association spend on research every year?
Last year, The ALS Association national office spent 28% of its operating budget on research—or $7.2 million. We have made commitments of far more than expended in any particular fiscal year. As of March 31, 2014, The Association has 98 active projects worth a total of $18,148,979. Earlier this August, we announced an additional $3.5 million in funding for 21 additional projects.

I’ve read that The ALS Association only spends 7% or 8% of its budget on research, is that true?
There is misinformation that inaccurately divides the amount the national office spends on research with the total expense of national and chapters combined. This presents a percentage spent on research that is misleading because chapters are not charged with administering the research program and therefore their expenses cannot be included in calculating the percent of our budget spent on research. Chapters support our research program in other ways and the national office is charged with the cost of administering our global research program. In FY14, 28% of our annual expenses ($26.2 million) supported ground breaking research into finding treatments and ultimately a cure for the disease. The breakdown of expenses is detailed on page 5 of the 2014 financial statement here. In addition, research is one part of our three pronged mission to create a world without ALS.

How do chapters of The ALS Association support research?
All chapters support research through their portion of revenue share to the national office and some chapters make direct contributions to the national office to support approved peer-reviewed projects. Chapters play a very critical role in moving research forward in several additional ways.

First, chapters have relationships with people living with the disease and encourage participation and enrollment in clinical trials, which is the only way that we are going to find treatments and a cure for the disease.
Second, chapters encourage enrollment in the National ALS Registry, which may be the single largest ALS research project ever, which is working to help identify the cause of ALS. Learn more at http://www.cdc.gov/als.
Finally, many chapters may provide financial support directly to Certified Treatment Centers of Excellence, where ALS patients are treated and clinical studies take place.

I saw another organization tout that it spends more on research than any other ALS-related charity, is that true?
Please keep in mind that The ALS Association is the only non-profit organization dedicated solely to fighting ALS on all fronts. Other organizations may not offer support to patients and their families fighting the disease now and they may be focused on other diseases besides ALS. It is important to ask questions and figure out how the organization is quantifying the figure and where that figure is documented since some organizations focus on how much they have committed to research over a one, two and/or three year period. For example, The ALS Association spent $7.2 million last year on research, but we have committed funding to 119 projects worth a total of $21.6 million.

On that last question, the other organization referred to is the ALS Therapy Development Institute, which is the exclusive beneficiary of Augie's Quest. I use those names synonymously, though they are not the same organization. It is also the organization you reach when you look up http://www.als.net. They are AWESOME. If you want all your money to go into research, you give to ALS-TDI. But bear in mind, none of that money will be used to provide support services for someone living with ALS now. The ALS Association is better if you want to attack this thing "on all fronts."

So thank you again, everyone, for making a spectacle of yourself by avoiding making donations (yet somehow raising more than $100 million toward a cause that desperately needed it).

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29-08-2014, 01:40 PM
RE: ALS ice challenge
(29-08-2014 09:50 AM)TwoCultSurvivor Wrote:  I’ve read that The ALS Association only spends 7% or 8% of its budget on research, is that true?
There is misinformation that inaccurately divides the amount the national office spends on research with the total expense of national and chapters combined. This presents a percentage spent on research that is misleading because chapters are not charged with administering the research program and therefore their expenses cannot be included in calculating the percent of our budget spent on research. Chapters support our research program in other ways and the national office is charged with the cost of administering our global research program. In FY14, 28% of our annual expenses ($26.2 million) supported ground breaking research into finding treatments and ultimately a cure for the disease. The breakdown of expenses is detailed on page 5 of the 2014 financial statement here. In addition, research is one part of our three pronged mission to create a world without ALS.

And that is disingenuous accounting bullshit. Drinking Beverage

What people want to know is what percentage of donations go to research. That number is in the 7% range.

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29-08-2014, 01:50 PM (This post was last modified: 29-08-2014 03:52 PM by TwoCultSurvivor.)
RE: ALS ice challenge
Welcome to the party!

Disingenuous bullshit is what you're trying to spread here, after the fact, by comparing apples and oranges and not doing the slightest bit of homework. Feel totally free to review the thread and get back to us when you do.

If you give to the ALS Association's national office (in previous years), 25 percent is going to research. Not 7 percent. That's the fact. Misinformation to the contrary is just that.

It really needs to be said: Most of the donations that have come through the Ice Bucket challenge have come to the national office. In prior years, the national office has spent between 20 and 25 percent of its income on research.

BUT

If you gave to a chapter, the numbers are different. That money primarily goes to patient support services. Very little of it goes to research, and it's not meant to (this is a fair avenue for criticism, by the way. I was not aware before today that when I give to a chapter, I am making research a very low priority. Fortunately, I also give to Augie's Quest, so I know that I am supporting both research and patient services. But those who ONLY give to a chapter may not know that they're giving very little to the search for a cure. Not that there's anything WRONG with placing patient care over research, but I wish the chapters would be a little more explicit about that).

When you ADD the national revenues to the local revenues, but compare the national expenditures to that combined revenue figure, you get a distorted picture. It suddenly looks like you're spending 7 percent of your revenue on research, when in fact the bulk of the revenue you're counting isn't even yours! Then you give the money (that isn't yours) back to the chapters, and it looks like an administrative expense (thus inflating the administrative figure). What's masked here is that each chapter is self-sustaining and highly efficient at providing services to people who need it. Meanwhile, when a chapter DOES fund research, it is NOT counted by the national office as money spent toward research! That's the chapter's business, not the national office's. So the 7 percent figure is artificially low for two reasons: it counts as revenue money that the national office never sees, and it doesn't count money spent by the chapters on research.

For those reasons, I think the combined revenue figures in the annual reports actually do more harm than good when it comes to educating the public on what the ALS Association does.

If a chapter doesn't claim to support research and doesn't do it, I don't have a problem with that. But if it's not clear (and I have to say, where I live, it is NOT clear), then that could be a problem. I want to see a cure, not just a pillow for a dying sufferer.

Etc.

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02-09-2014, 10:06 AM
RE: ALS ice challenge
I'll stop. I promise. But I wanted to wedge these two articles in here.

The first is by me. Really. That's me. I was honored to have my paper publish this piece on the anniversary of my sister's death.

The second is by the ALS Association, responding to one of the ridiculous articles that have been making the rounds.

Enjoy. I'm done. Pinky swear (as long as no one calls me back to the topic).

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