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whitetiger
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08 Apr 2010, 9:53 pm

http://www.bbb.org/charity-reviews/nati ... rk-ny-1456

"Autism Speaks does not meet one or more standards..."


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CockneyRebel
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08 Apr 2010, 11:23 pm

That doesn't surprise me, with the way that they want to cure and eliminate us, and the scare tactics that they use, to make people afraid of the word, autism.


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carzak
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09 Apr 2010, 12:11 am

Where does it say it is "not recommended" by BBB?

It says it doesn't meet a particular standard:

Quote:
Autism Speaks (AS) does not meet the followingStandard for Charity Accountability:

Standard 19: Cause Related Marketing - Clearly disclose how the charity benefits from the sale of products or services (i.e., cause-related marketing) that state or imply that a charity will benefit from a consumer sale or transaction. Such promotions should disclose, at the point of solicitation: (a) the actual or anticipated portion of the purchase price that will benefit the charity (e.g., 5 cents will be contributed to abc charity for every xyz company product sold), (b) the duration of the campaign (e.g., the month of October), (c) any maximum or guaranteed minimum contribution amount (e.g., up to a maximum of $200,000).

AS does not meet this Standard because, in the past year, the organization participated in an affinity credit card program and the promotion does not indicate how much AS receives when a new account is set up and what percentage of each sale is given to AS anytime a purchase is made with the card.

Autism Speaks (AS) meets the remaining 19Standards for Charity Accountability.


It sounds like a pretty minor infraction and an overall good evaluation to me.



pandd
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09 Apr 2010, 12:12 am

Good on the BBB, thanks for posting the link Whitetiger.



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09 Apr 2010, 12:28 am

CockneyRebel wrote:
That doesn't surprise me, with the way that they want to cure and eliminate us, and the scare tactics that they use, to make people afraid of the word, autism.


Hate to use a harsh example, but the way Autism Speaks behaves is almost like the Holocaust. I wonder if they're capable of going to those extremes.



ViperaAspis
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09 Apr 2010, 3:06 am

Thanks for the great link, WhiteTiger. I'm posting the data to my local ASAN group here in Portland, OR.


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09 Apr 2010, 3:54 am

You do have to pay to join the BBB, and these "Reports" are just their shake down method.

Autism Speaks has reduced costs as a percent of funds raised, raised more funds, and the "Sales Income" spoken of is reported in the statment.

Credit cards are a good way of spreading Autism Awareness. It is not "income," it is another path of donations.

A major credit card company can donate some of their income, and spread autism awareness.

Neither Autism Speaks or the credit card company makes any percentage on the sale, only the usual transaction fee, then interest.

The writer of this lacks knowledge, or is misrepresenting how all credit cards work.

I have reviewed Autism Speaks statments, they run a clear and clean set of books.

The BBB has approved some major consumer fraud companies, who paid the fees and got the plastic plaque.

Customers who get screwed will also be dumb enough to file a complaint with the BBB, who will look into it, stall, till the crooks move to the next town. Then they revoke the old BBB Aproved, and aprove the new, for $35, which comes with a new plastic plaque.

Those who complain about those who are doing something, are always out to get some of the money.

Autism Speaks has yet to raise one day's cost of autism, and 75% of that is all the private research money there is. 18 hours out of a year is going to try to do something.

You should all file a complaint with the BBB.



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09 Apr 2010, 5:47 am

ViperaAspis wrote:
Thanks for the great link, WhiteTiger. I'm posting the data to my local ASAN group here in Portland, OR.



Have you been going to the groups? I forgot what you looked like.



kc8ufv
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09 Apr 2010, 7:57 am

All the report seems to mention is accounting practices. In other words, they state that Autism Speaks knows where their money came from, and where it went/is.

Now, looking at some of the information in the report about where the money went, I wouldn't mind having either of these two's salary...

Quote:
Chief Executive : Mark Roithmayr, President
Compensation*: $400,413

Highest Paid Executive: Geri Dawson, Chief Science Officer
Compensation*: $669,751



whitetiger
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09 Apr 2010, 11:27 am

There is a website on line that has a link to the books of Autism Speaks. I wish I knew it. It also has a summary of what percent gets paid to execs and what percent goes to help autistics, which I believe was 6%.

Maybe we SHOULD all complain to the BBB :)


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09 Apr 2010, 3:34 pm

The article states it, 25% goes to all fund raising costs, 75% gets donated to programs, and most of that is research.

Pay levels seem more University than New York CEO.



ViperaAspis
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13 Apr 2010, 10:46 pm

Ah, questions about where the money goes. To satisfy Inventor, we need to throw in some stats and verifiable data - 75% sounds correct (and makes it sound like they're a really nice organization) until you break down the 75% a little more.

From: http://www.ipetitions.com/petition/autismspeaks/

"...while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing."

They really want the prenatal test. Once they get the prenatal test down, the same thing will happen to us as happens to Downs Syndrome kids. 91-93% termination rate. Then there will be no more Inventors :(

Source for termination rate: Caroline Mansfield, Suellen Hopfer, Theresa M. Marteau (1999). "Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: a systematic literature review". Prenatal Diagnosis 19 (9): 808–812. doi:10.1002/(SICI)1097-0223(199909)19:9<808::AID-PD637>3.0.CO;2-B. PMID 10521836. http://www3.interscience.wiley.com/cgi- ... 7/ABSTRACT. This is similar to 90% results found by David W. Britt, Samantha T. Risinger, Virginia Miller, Mary K. Mans, Eric L. Krivchenia, Mark I. Evans (1999). "Determinants of parental decisions after the prenatal diagnosis of Down syndrome: Bringing in context". American Journal of Medical Genetics 93 (5): 410–416. doi:10.1002/1096-8628(20000828)93:5<410::AID-AJMG12>3.0.CO;2-F. PMID 10951466.


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ViperaAspis
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13 Apr 2010, 11:44 pm

League_Girl wrote:
Have you been going to the groups? I forgot what you looked like.


I stay deliberately nondescript because I have some very minor involvement in a very specific small-scale local (city) government process here in PDX and would prefer not to be recognized in conjunction with the Autistic Spectrum at this time. I "attend" the meetings vicariously via the minutes.

Don't take this like I'm trying to say "I'm a SOMEBODY" or something. I'm not; I really doubt any Caucasian would recognize me.

At the Pioneer Square rally, you were the one who handed me the flier about ASAN which marked the start of my involvement with the group. I was wearing large reflective glasses, an oversized cap and a blue shirt.


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17 Apr 2010, 4:31 pm

Quote:
We don't evaluate Autism Speaks.
Why not? This organization does not meet all of our requirements for inclusion on our website. We require 4 years of Forms 990 to complete an evaluation.Autism Speaks

Autism Speaks would only hit around 2 out of 4 stars on Charity Navigator, their Organizational Efficiency is way too low for a good rating.


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FlyingAeroplane
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17 Apr 2010, 4:53 pm

ViperaAspis wrote:
Ah, questions about where the money goes. To satisfy Inventor, we need to throw in some stats and verifiable data - 75% sounds correct (and makes it sound like they're a really nice organization) until you break down the 75% a little more.

From: http://www.ipetitions.com/petition/autismspeaks/

"...while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing."

They really want the prenatal test. Once they get the prenatal test down, the same thing will happen to us as happens to Downs Syndrome kids. 91-93% termination rate. Then there will be no more Inventors
:(

Source for termination rate: Caroline Mansfield, Suellen Hopfer, Theresa M. Marteau (1999). "Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: a systematic literature review". Prenatal Diagnosis 19 (9): 808–812. doi:10.1002/(SICI)1097-0223(199909)19:9<808::AID-PD637>3.0.CO;2-B. PMID 10521836. http://www3.interscience.wiley.com/cgi- ... 7/ABSTRACT. This is similar to 90% results found by David W. Britt, Samantha T. Risinger, Virginia Miller, Mary K. Mans, Eric L. Krivchenia, Mark I. Evans (1999). "Determinants of parental decisions after the prenatal diagnosis of Down syndrome: Bringing in context". American Journal of Medical Genetics 93 (5): 410–416. doi:10.1002/1096-8628(20000828)93:5<410::AID-AJMG12>3.0.CO;2-F. PMID 10951466.

I think your comments on the pre-natal test are just scaremongering. Lets face it, somehow they need to get doctors to do these abortions. Not to mention the fact that the test would reveal the little bit of Autism in each parent - nor will it be able to tell if a child will get Autism, or what degree. Rather, it will just give a probability along with a variance on a distribution.



ViperaAspis
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17 Apr 2010, 6:52 pm

flyingaeroplane wrote:
I think your comments on the pre-natal test are just scaremongering...


From your lips to whatever God you worship's ears, my friend. I hope you're right.

flyingaeroplane wrote:
Lets face it, somehow they need to get doctors to do these abortions.


They seem to have found them regarding Down's. Whether they seek them out regarding Autism depends on how much they see Autism as the bogeyman. All I can tell you there is that Autism Speaks is doing a good job of making Autism look pretty scary ("I am Autism video et. al.).

flyingaeroplane wrote:
...the fact that the test would reveal the little bit of Autism in each parent - nor will it be able to tell if a child will get Autism, or what degree. Rather, it will just give a probability along with a variance on a distribution.


I'd have to disagree that this is a "fact". They have not succeeded in creating this test, therefore we don't currently know what form the test would take, how accurate it would be, or what could be inferred from the data. If you have statistics or references to support your position, please cite them (a link is okay, you don't need to be as formal with citations as I was in my last paragraph there). Otherwise as the person making this claim, the onus of proof is on you. (i.e. I'm not going to spend any time trying to dis-prove it).


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