autism speaks

November 30, 2006

what good is all the publicity if it doesn't get to the bottom of the epidemic to stop it from going further and what good is all the publicity if it doesn't get help for my grandson in the way of services, proven cures or monetary help? Medicaid still doesn't pay for out of state DANS, compounding drugs etc ad nauseam?Debi <fightingautism@...> wrote: I would disagree on that to an extent. Since the s came forwardI've had many aquaintances talking to me about autism, saying it'sbecause they'd seen the

s or AutismSpeaks info on one of thetalk shows or a commercial or something like that. These people haveknown for years that Allie has autism, but they're only just now,after Autism Speaks started their publicity, began thinking about itand feeling open enough to discuss it, and I'm a VERY open person. I think they are doing good on the publicity front, just not theresearch front.Debi-- In EOHarm , "Kendra Pettengill" <achsel@...> wrote:>> And speaks and speaks and speaks, unfortunately not for people with > Autism. Self-tooting. Perhaps combined ineffectiveness (two > negatives) will somehow bring about a positive. Anyone want to hold > their breath on this one. CANnot SPEAK (for anyone). > Kendra>

Everyone is raving about the all-new beta.

November 30, 2006

On the publicity front, I will mention that Rosie O'Donnell from

The View mentioned on her blog that they are going to be doing a

full hour on Autism next month. I'm not sure whether it will be all

fluff but I know that they did have Suzanne on previously and

the vaccine question came up and then more recently there was

someone else on there who was talking about toxins, etc. and one of

the hosts asked him about the vaccination question. So, minimally

they have a little bit of background on the topic.

Also, for some reason, Rosie O'Donnell posts alot of questions

about Autism on her blog (people can e-mail her and she responds on

her blog). I think it is safe to say that someone close to her is

affected.

Feel free to go to her blog scroll down under the picture to " ask a

question " and ask away... or make a comment. She does read them. I

know a lot of people don't like her but one thing you have to say is

that she's not afraid to speak her mind and doesn't really give a

crap what people say ... Not necessarily a bad thing in this

debate.

Her blog is:

http://www.rosie.com/blog/

Sue M.

> >

> > And speaks and speaks and speaks, unfortunately not for people

with

> > Autism. Self-tooting. Perhaps combined ineffectiveness (two

> > negatives) will somehow bring about a positive. Anyone want to

hold

> > their breath on this one. CANnot SPEAK (for anyone).

> > Kendra

> >

>

November 30, 2006

Thanks for the heads up. As someone who is a huge Rosie fan (if you

meet me or ever " tawk " wid me, youse know why), as well as someone

who too has adopted an older child from a foreign country, I can

probably safely say that there are most likely issues in her

household that resemble autism, such as reactive attachment disorder

and attachment disorder. She's battling it out like the rest of us.

There are times when my daughter very much resembles autism, even

though I know that is not the case with her.

Rosie is just a champion for all kids though and that's probably what

has peaked her interest. She's a good one to have on the team!

Sally

> > >

> > > And speaks and speaks and speaks, unfortunately not for people

> with

> > > Autism. Self-tooting. Perhaps combined ineffectiveness (two

> > > negatives) will somehow bring about a positive. Anyone want to

> hold

> > > their breath on this one. CANnot SPEAK (for anyone).

> > > Kendra

> > >

> >

>

November 30, 2006

Because all those people who never talked to me about it before are

now talking to me. They're now listening when I tell them about Allie

having mercury problems and aluminum problems and all the vaccine

stuff. It's opening their minds to listen. With them listening many of

them are making changes for their kids and their grandkids involving

vaccinations.

You are right, my private insurance doesn't pay and we don't qualify

for TNcare which wouldn't pay anyway. Thankfully, our compounding drug

bill is only about $100/mo. Somehow we've been able to swing that

while I've been at home. That's one reason why I'm back in college so

when I finish we can have our own medical savings to spend as we want.

We've got to take it out of the gov's hands and back into our own. If

I'm gonna pay $700/mo for insurance, I'd rather it go to actually pay

something, that's where medical savings comes in.

Debi

>

> what good is all the publicity if it doesn't get to the bottom of

the epidemic to stop it from going further and what good is all the

publicity if it doesn't get help for my grandson in the way of

services, proven cures or monetary help? Medicaid still doesn't pay

for out of state DANS, compounding drugs etc ad nauseam?

>

November 30, 2006

Because all those people who never talked to me about it before are

now talking to me. They're now listening when I tell them about Allie

having mercury problems and aluminum problems and all the vaccine

stuff. It's opening their minds to listen. With them listening many of

them are making changes for their kids and their grandkids involving

vaccinations.

You are right, my private insurance doesn't pay and we don't qualify

for TNcare which wouldn't pay anyway. Thankfully, our compounding drug

bill is only about $100/mo. Somehow we've been able to swing that

while I've been at home. That's one reason why I'm back in college so

when I finish we can have our own medical savings to spend as we want.

We've got to take it out of the gov's hands and back into our own. If

I'm gonna pay $700/mo for insurance, I'd rather it go to actually pay

something, that's where medical savings comes in.

Debi

>

> what good is all the publicity if it doesn't get to the bottom of

the epidemic to stop it from going further and what good is all the

publicity if it doesn't get help for my grandson in the way of

services, proven cures or monetary help? Medicaid still doesn't pay

for out of state DANS, compounding drugs etc ad nauseam?

>

November 30, 2006

One of Rosie's children was quite a late talker - I don't know

whether that resolved itself or not... maybe it made her more aware

of autism.

> > >

> > > And speaks and speaks and speaks, unfortunately not for people

> with

> > > Autism. Self-tooting. Perhaps combined ineffectiveness (two

> > > negatives) will somehow bring about a positive. Anyone want to

> hold

> > > their breath on this one. CANnot SPEAK (for anyone).

> > > Kendra

> > >

> >

>

June 15, 2007

You can go to their website & see that they do put quite a bit of

money into research. The question becomes what sort of research. I

personally think they have done a slightly better job in funding some

environmental research, but I also think there is some wasted money. I

say check it out for yourself.

HTH,

Debi

June 15, 2007

Well, here are a couple more reasons why Autism Speaks does not speak

for all of us:

Their tax files for 2005 and 2006 are listed at the bottom of this

website

_http://adventuresinautism.blogspot.com/2007/06/i-take-back-every-

nice-thing-i

-have.html_

(http://adventuresinautism.blogspot.com/2007/06/i-take-back-every-

nice-thing-i-have.html)

Autism Speaks Form 990 raises serious red flags. Serious. This is all

from the official filing for 2006.

1. Three members of the Board of Directors received $2.5 million for

their

own organizations.

2. The President Mark Rothmeyer, just received a 5 year contract for

about

$2,000,000

including bonuses with no prior background with autism.

3. The grants are primarily going to those representing institutions

that

are reviewing the grants. There is no indication that these conflicts

are

independently reviewed

4. The location of this small and new foundation is in very expensive

downtown New York facilities rented for $200,000 by the institution

that is run by

the Chairman of Autism Speaks.

5. A expense of a Private Jet plane for $57,000 was noted. This is

very

unusual for a new non profit groups.

6. The head of the scientific review received the majority of the

funds for

2005 for his institution for a data base - almost $3 million

Since the funding is now from the public - and the advertising and

promotion

tugs at the publics heart strings with images of families in need -

the

funds collected MUST be about those it raises the money for.

The following are all taken from the Form 990 filing

Web Site $830,000

Software for the computer $514,000

Lawyers $440,000

Computers $337,000

Public relations $285,000

Office annual rent $200,000

HR consultant $110,000

Editorial Consultant $76,000

Private Jet Plane for someone that entertained $57,000

Mark Rothmeyer* $360,000

Bell [$240,000?]

Alison Singer $168,000

Mr Ringall $150,000

Andy Shik $110,000

Remember all the above also gets significant fring benefits that

probably add.

Mark Rothmayer also can get $50,000 more with a bonus a year benefits

Here is the _AS 2005 990_

(http://www.guidestar.org/FinDocuments/2005/202/329/2005-202329938-

0251abcb-9.pdf) . Here is the _2006 990_

(http://www.autismspeaks.org/docs/d_200705_AS_Form_990_-_2006.pdf) .

Further discussions on AS allocation of funds, choices and ethics can

be

found _here_

(http://adventuresinautism.blogspot.com/2007/06/bob-and-suzanne-hurt-

another-autism.html) , _here_

(http://adventuresinautism.blogspot.com/2007/06/monica-bice-why-i-

hate-autism-speaks.html) and _here_

(http://adventuresinautism.blogspot.com/2007/06/questioning-plan-of-

autism-speaks.html) .

Read all post on Autism Speaks _here_

(http://adventuresinautism.blogspot.com/search/label/Autism%

20Speaks) .

June 15, 2007

Don't forget the dalmation puppy fur lined $5,000 toilet seats.

>

> Well, here are a couple more reasons why Autism Speaks does not speak

> for all of us:

>

> Their tax files for 2005 and 2006 are listed at the bottom of this

> website

> _http://adventuresinautism.blogspot.com/2007/06/i-take-back-every-

> nice-thing-i

> -have.html_

> (http://adventuresinautism.blogspot.com/2007/06/i-take-back-every-

> nice-thing-i-have.html)

>

> Autism Speaks Form 990 raises serious red flags. Serious. This is all

> from the official filing for 2006.

>

> 1. Three members of the Board of Directors received $2.5 million for

> their

> own organizations.

>

> 2. The President Mark Rothmeyer, just received a 5 year contract for

> about

> $2,000,000

>

> including bonuses with no prior background with autism.

>

> 3. The grants are primarily going to those representing institutions

> that

> are reviewing the grants. There is no indication that these conflicts

> are

> independently reviewed

>

> 4. The location of this small and new foundation is in very expensive

> downtown New York facilities rented for $200,000 by the institution

> that is run by

> the Chairman of Autism Speaks.

>

> 5. A expense of a Private Jet plane for $57,000 was noted. This is

> very

> unusual for a new non profit groups.

>

> 6. The head of the scientific review received the majority of the

> funds for

> 2005 for his institution for a data base - almost $3 million

>

> Since the funding is now from the public - and the advertising and

> promotion

> tugs at the publics heart strings with images of families in need -

> the

> funds collected MUST be about those it raises the money for.

>

> The following are all taken from the Form 990 filing

>

> Web Site $830,000

> Software for the computer $514,000

> Lawyers $440,000

> Computers $337,000

> Public relations $285,000

> Office annual rent $200,000

> HR consultant $110,000

> Editorial Consultant $76,000

> Private Jet Plane for someone that entertained $57,000

>

> Mark Rothmeyer* $360,000

> Bell [$240,000?]

> Alison Singer $168,000

> Mr Ringall $150,000

> Andy Shik $110,000

>

> Remember all the above also gets significant fring benefits that

> probably add.

>

> Mark Rothmayer also can get $50,000 more with a bonus a year benefits

>

> Here is the _AS 2005 990_

> (http://www.guidestar.org/FinDocuments/2005/202/329/2005-202329938-

> 0251abcb-9.pdf) . Here is the _2006 990_

> (http://www.autismspeaks.org/docs/d_200705_AS_Form_990_-_2006.pdf) .

>

> Further discussions on AS allocation of funds, choices and ethics can

> be

> found _here_

> (http://adventuresinautism.blogspot.com/2007/06/bob-and-suzanne-hurt-

> another-autism.html) , _here_

> (http://adventuresinautism.blogspot.com/2007/06/monica-bice-why-i-

> hate-autism-speaks.html) and _here_

> (http://adventuresinautism.blogspot.com/2007/06/questioning-plan-of-

> autism-speaks.html) .

>

> Read all post on Autism Speaks _here_

> (http://adventuresinautism.blogspot.com/search/label/Autism%

> 20Speaks) .

>

June 15, 2007

>

> Don't forget the dalmation puppy fur lined $5,000 toilet seats.

Hey will that get our kids to pee in the pot?

June 15, 2007

Autism Speaks still isn't as bad as what CAN did. They gave $500,000

to Merzenich for nothing in return. Merzenich sells " brain fitness

tapes " . It is on their tax returns. The AGRE gene bank got millions

of dollars - and it doesn't cost a fraction of that to run. Why does

know one care about where the money went? Maybe they walked in too

many circles for CAN and are Dizzy.

> >

> > Well, here are a couple more reasons why Autism Speaks does not

speak

> > for all of us:

> >

> > Their tax files for 2005 and 2006 are listed at the bottom of

this

> > website

> > _http://adventuresinautism.blogspot.com/2007/06/i-take-back-every-

> > nice-thing-i

> > -have.html_

> > (http://adventuresinautism.blogspot.com/2007/06/i-take-back-every-

> > nice-thing-i-have.html)

> >

> > Autism Speaks Form 990 raises serious red flags. Serious. This is

all

> > from the official filing for 2006.

> >

> > 1. Three members of the Board of Directors received $2.5 million

for

> > their

> > own organizations.

> >

> > 2. The President Mark Rothmeyer, just received a 5 year contract

for

> > about

> > $2,000,000

> >

> > including bonuses with no prior background with autism.

> >

> > 3. The grants are primarily going to those representing

institutions

> > that

> > are reviewing the grants. There is no indication that these

conflicts

> > are

> > independently reviewed

> >

> > 4. The location of this small and new foundation is in very

expensive

> > downtown New York facilities rented for $200,000 by the

institution

> > that is run by

> > the Chairman of Autism Speaks.

> >

> > 5. A expense of a Private Jet plane for $57,000 was noted. This

is

> > very

> > unusual for a new non profit groups.

> >

> > 6. The head of the scientific review received the majority of the

> > funds for

> > 2005 for his institution for a data base - almost $3 million

> >

> > Since the funding is now from the public - and the advertising

and

> > promotion

> > tugs at the publics heart strings with images of families in

need -

> > the

> > funds collected MUST be about those it raises the money for.

> >

> > The following are all taken from the Form 990 filing

> >

> > Web Site $830,000

> > Software for the computer $514,000

> > Lawyers $440,000

> > Computers $337,000

> > Public relations $285,000

> > Office annual rent $200,000

> > HR consultant $110,000

> > Editorial Consultant $76,000

> > Private Jet Plane for someone that entertained $57,000

> >

> > Mark Rothmeyer* $360,000

> > Bell [$240,000?]

> > Alison Singer $168,000

> > Mr Ringall $150,000

> > Andy Shik $110,000

> >

> > Remember all the above also gets significant fring benefits that

> > probably add.

> >

> > Mark Rothmayer also can get $50,000 more with a bonus a year

benefits

> >

> > Here is the _AS 2005 990_

> > (http://www.guidestar.org/FinDocuments/2005/202/329/2005-

202329938-

> > 0251abcb-9.pdf) . Here is the _2006 990_

> > (http://www.autismspeaks.org/docs/d_200705_AS_Form_990_-

_2006.pdf) .

> >

> > Further discussions on AS allocation of funds, choices and ethics

can

> > be

> > found _here_

> > (http://adventuresinautism.blogspot.com/2007/06/bob-and-suzanne-

hurt-

> > another-autism.html) , _here_

> > (http://adventuresinautism.blogspot.com/2007/06/monica-bice-why-i-

> > hate-autism-speaks.html) and _here_

> > (http://adventuresinautism.blogspot.com/2007/06/questioning-plan-

of-

> > autism-speaks.html) .

> >

> > Read all post on Autism Speaks _here_

> > (http://adventuresinautism.blogspot.com/search/label/Autism%

> > 20Speaks) .

> >

>

June 15, 2007

They flush millions of dollars down the

genetic toilet. What a waste! There is no such thing as a genetic epidemic!

Pamela

" Courage is doing

what you're afraid to do. There can be no courage unless you're scared. "

Eddie Rickenbacker,

top US

fighter ace, WWI

From: EOHarm

[mailto:EOHarm ] On Behalf Of autisticchildsdad

Sent: Thursday, June 14, 2007

11:48 PM

EOHarm

Subject: Autism Speaks

Ok, I am new here. I was playing Blackjack when

I met this nice

lady that told me about this group. We were talking and I told her I

was doing a walk in Sept. When she found out that it was for Autism

Speaks, she told me that they don't put much money towards research.

Can someone please give me details on this. I don't want to help

support something that isn't helping the kids. My daughter has autism,

and I want to help with finding a cure for her and all these great

kids. I am not sure who to deal with now, I never thougt about an

organization stealing from our children.

June 15, 2007

I'm the first one to say there's not enough for environmental & too

much for genetics. At the same time, there could be a real benefit

from some of it. Like with PKU, now they can test at birth to

determine who shouldn't come in contact with the offending protein.

Wouldn't it be great if we could find any marker to test for at birth

that will be a flag for not getting any immunizations? I have a 10 yr

old who is perfectly NT who was fully immunized & one who has

vaccine-induced autism, another one who is NT who never had any

immunizations. I hope for their future children that we can find any

potential triggers to flag their babies at birth or before.

Debi

>

> They flush millions of dollars down the genetic toilet. What a waste!

> There is no such thing as a genetic epidemic!

>

> Pamela

>

> " Courage is doing what you're afraid to do. There can be no courage

unless

> you're scared. "

>

> Eddie Rickenbacker, top US fighter ace, WWI

>

June 15, 2007

If you read between the lines - maybe the CAN board members were

spending it on themselves - not flushing it down the toilet.

>

> They flush millions of dollars down the genetic toilet. What a

waste!

> There is no such thing as a genetic epidemic!

>

> Pamela

>

> " Courage is doing what you're afraid to do. There can be no

courage unless

> you're scared. "

>

> Eddie Rickenbacker, top US fighter ace, WWI

>

> _____

>

> From: EOHarm [mailto:EOHarm ] On

Behalf Of

> autisticchildsdad

> Sent: Thursday, June 14, 2007 11:48 PM

> EOHarm

> Subject: Autism Speaks

>

> Ok, I am new here. I was playing Blackjack when I met this

nice

> lady that told me about this group. We were talking and I told her

I

> was doing a walk in Sept. When she found out that it was for Autism

> Speaks, she told me that they don't put much money towards

research.

> Can someone please give me details on this. I don't want to help

> support something that isn't helping the kids. My daughter has

autism,

> and I want to help with finding a cure for her and all these great

> kids. I am not sure who to deal with now, I never thougt about an

> organization stealing from our children.

>

January 17, 2008

The band, Five for Fighting, is generously donating $0.40 to Autism Speaks each time this video is viewed. The funding goes toward research studies to help find a cure. When you have a moment, please visit the link below to watch the video and pass it along. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal.http://www.whatkindofworlddoyouwant.com/videos/view/id/408214

I checked, and it is for real!

Urban Legends Reference Pages: Five for Fighting - Autism Speaks

Start the year off right. Easy ways to stay in shape in the new year.

January 17, 2008

, thanks for sharing that. I sent this on to others too. Lowry <flyballmom@...> wrote: The band, Five for Fighting, is generously donating $0.40 to Autism Speaks each time this video is viewed. The funding goes toward research studies to help find a cure. When you have a moment, please visit the link below to watch the video and pass it along. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal.http://www.whatkindofworlddoyouwant.com/videos/view/id/408214 I checked, and it is for real! Urban Legends Reference Pages: Five for Fighting - Autism Speaks Start the year off right. Easy ways to stay in shape in the new year.

Never miss a thing. Make your homepage.

January 17, 2008

Me too . I sent this to my other group & I sent it to 34 people I know. Thanks, Betty Rose <beachbodytan2002@...> wrote: , thanks for sharing that. I sent this on to others too. Lowry <flyballmomhotmail> wrote: The band, Five for Fighting, is generously donating $0.40 to Autism Speaks each time this video is viewed. The funding goes toward research studies to help find a cure. When you have a moment, please visit the link below to watch the video and pass it along. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal.http://www.whatkindofworlddoyouwant.com/videos/view/id/408214 I checked, and it is for real! Urban Legends Reference Pages: Five for Fighting - Autism Speaks Start the year off right. Easy ways to stay in shape in the new year. Never miss a thing. Make your homepage.

Looking for last minute shopping deals? Find them fast with Search.

January 24, 2008

Could we meet at a SpeakEasy to discuss this? Lenny will get that.

Right, Lenny?

KS

January 24, 2008

Speaks to me.

>

> Could we meet at a SpeakEasy to discuss this? Lenny will get that.

> Right, Lenny?

>

> KS

>

January 25, 2008

Speaktacular. I knew it would.

>

> Speaks to me.

>

March 21, 2009

Sondra, I don't think AS is going to make money off the state insurance stuff, I

think it's actually something they believe in.

I believe they are pushing for ABA because it's one of the only

scientifically-proven therapies and because it's so expensive for families and

difficult to pay for.

From my understanding on the biomed end, the former head of AS, Alison Singer,

is adamantly opposed to biomed and very pro vaccines. The family, the one

who founded AS, is very much for biomed. So I think (and all this is only my

opinion to which others are welcome to disagree) they got board members who may

be really good at raising money but not all that good at understanding autism,

so they set off following singer's lead. I think many of their scientific people

are pro genetic research because before AS, and largely since AS, that's where

most of the autism research was being funded/done was in genetic research.

One thing I have seen BIG TIME in the scientific/medical community is that

science is not based off what we are taught, proving/disproving theories. It's

full of politics, cliques, and butt-kissing (metaphor used) so that science

isn't nearly as much about truth-finding as people like you and me are lead to

believe.

As to the money end of AS, I personally find them very dishonest. We had a big

banquet to kick of AS here in Knoxville. The paid person who came to answer

questions was VERY evasive and did not and would not answer very basic questions

about their financial stuff. They pay a HUGE rent in Manhattan, HUGE salaries,

etc. Now some will argue you have to spend money to make money. Some will argue

you have to pay high salaries to get people in who know how to fundraise and

have offices near rich people to get the rich people interested. I get that to

an extent but think there should be compromises on that.

My bottom line is I don't think AS is all bad but I definitely think there are

better orgs out there, like NAA, Generation Rescue, and a few others.

HTH,

Debi

March 21, 2009