Re: Wagers for AS shuting down??

[Guest guest]

Really. NAAR has supposedly been around since 1994. You'd think by the year 2003, they would have exhausted all of the genetic stuff and moved on, but this has been twelve years now. I agree....... stop the flogging already.RoxEllen Sweeney <support4autism@...> wrote: Marty, I understand what youre saying but how many times are we going to have to fund the same study or type of study to realize that we are flogging a dead horse? While NAAR was a pioneer, I am not disagreeing with

you on this, I have to agree with people like when she said they need to step aside and let others do more progressive research. Research into environmental causes for one. (and I dont mean just vaccines). Organizations that do autism research in a vacuum and do not fund all different types of research into potential causes of autism are doing a disservice to the community. Org's like NAA and SafeMinds that dont have the big budgets like the former NAAR and CAN and now AS have no choice but to allocate money just to research into environmental causes including vaccines. I mean c'mon why do they have to fund gentic research when orgs like NAAR and CAN and now AS are dumping millions into this type of research? They dont.....But when the latter orgs are making millions duping, yes I am saying duping, parents into helping them raise funds for research they need to do all types and not

just fund genetic research. They have the capital to fund major fundraising initiatives and get celebrities to speak for them, this is how they get parents to raise money for them. AS writes this in their goals : We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals. Yet they fund science to the contrary.....and if I recall there were similar statements in NAAR and CAN's mission statements (I May be wrong tho) and the leaders of the former NAAR and CAN support these goals as they say they were the goals of their organizations. AS is Duping the community into believing they are funding research

into all causes and providing help to families dealing with autism diagnoses. As far as I can tell, the only national org help families is NAA. When organizations like NAAR and CAN who were getting money from sponsors/contributors (and we all know who some of these sponsors are!), they steer research in the direction that these contributors want them to. This is a fact. Who were some of NAAR's contributors? As for your question about where I was at NAAR's inception, I didnt have a child diagnosed on the spectrum. He was poisoned by his vaccines after its inception. And maybe just maybe if the "pioneers" were doing research into environmental causes as well as genetic research, a whole bunch of kids like my son for instance never would have been poisoned by vaccines. Ellen > > > > > > How many months will it still be around? Can we all make enough of > > a > > > difference in questioning AS, and getting lame replies. Then > > forwarded > > > to various media outlets, AS refusal to talk. > > > Can we actually get records of their total contributions each year > > and > > > which organization? > > > Any other suggestions? > > > I know we need to form other groups to raise money - I just feel AS > > is > > > sucking so much out of the General Public that many are blinded who > > to > > > donate to. > > > We need some ideas, people who

can give time, and services to put > > the > > > attention back where it should be --on our children. > > > > > >

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Search.

[Guest guest]

I appreciate your comments and also wish the best for Autism

United.

Marty

> >>>>> > > > >

> >>>>> > > > > How many months will it still be around? Can we all make

enough

> >> > of

> >>>> > > > a

> >>>>> > > > > difference in questioning AS, and getting lame replies.

Then

> >>>> > > > forwarded

> >>>>> > > > > to various media outlets, AS refusal to talk.

> >>>>> > > > > Can we actually get records of their total contributions

each

> >> > year

> >>>> > > > and

> >>>>> > > > > which organization?

> >>>>> > > > > Any other suggestions?

> >>>>> > > > > I know we need to form other groups to raise money - I

just

> >> > feel AS

> >>>> > > > is

> >>>>> > > > > sucking so much out of the General Public that many are

blinded

> >> > who

> >>>> > > > to

> >>>>> > > > > donate to.

> >>>>> > > > > We need some ideas, people who can give time, and

services to

> >> > put

> >>>> > > > the

> >>>>> > > > > attention back where it should be --on our children.

> >>>>> > > > >

> >>>> > > >

> >>> > >

> >> >

> >

> >

>

[Guest guest]

Well, I said " SO MANY " of our children in caps because of exactly your

point here...note I did not say ALL of our children. I think we all

GET IT that there is no blanket answer here, but if some kids could be

helped and others could be prevented from going down this road at all,

then we would be doing better than we are today.

> > > > > > >

> > > > > > > How many months will it still be around? Can we all make

> enough

> > > > of

> > > > > > a

> > > > > > > difference in questioning AS, and getting lame replies. Then

> > > > > > forwarded

> > > > > > > to various media outlets, AS refusal to talk.

> > > > > > > Can we actually get records of their total contributions

> each

> > > > year

> > > > > > and

> > > > > > > which organization?

> > > > > > > Any other suggestions?

> > > > > > > I know we need to form other groups to raise money - I just

> > > > feel AS

> > > > > > is

> > > > > > > sucking so much out of the General Public that many are

> blinded

> > > > who

> > > > > > to

> > > > > > > donate to.

> > > > > > > We need some ideas, people who can give time, and services

> to

> > > > put

> > > > > > the

> > > > > > > attention back where it should be --on our children.

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Rox, how silly - flogging. I like that one.

On a more serious note, recall NAAR did not conduct scientific studies

nor conduct any research. They funded primarily pilot grants from the

proposals it received. It would be nice if life were so simple that an

organization could fund pilot grants for 10 years and exhaust all

genetic avenues but that is not reality.

Just look at other organizations outside of the autism world, genetic

studies have been going on for far longer. Some with results and others

with nothing to really speak of.

While I agree genetic research should not be the only avenue to pursue,

I suspect that AS may have somewhat the same problem as NAAR did in that

the proposals did not come in. I wish I knew the the answer to that.

In any event, unless I am missing the point the simple course of action

would be to get researchers to submit proposal to AS as that will tell

the story or create another organization to fund alternative research.

Personally, I would like to see both occur.

Marty

> > > >

> > > > How many months will it still be around? Can we all make enough

> of

> > > a

> > > > difference in questioning AS, and getting lame replies. Then

> > > forwarded

> > > > to various media outlets, AS refusal to talk.

> > > > Can we actually get records of their total contributions each

> year

> > > and

> > > > which organization?

> > > > Any other suggestions?

> > > > I know we need to form other groups to raise money - I just

> feel AS

> > > is

> > > > sucking so much out of the General Public that many are blinded

> who

> > > to

> > > > donate to.

> > > > We need some ideas, people who can give time, and services to

> put

> > > the

> > > > attention back where it should be --on our children.

> > > >

> > >

> >

>

>

>

>

>

>

> ---------------------------------

> Luggage? GPS? Comic books?

> Check out fitting gifts for grads at Search.

>

[Guest guest]

I understand but seriousely given 's staus of late, would't it be

powerful if she could documemnt her son's success. The sceptics always

complain of annectodat stories and this could be a chance to showcase a

success if it truly is. Of course it is up to but it seems that

she has a golden oppertunity to help many more.

Thoughts?

Marty

> > > > > > > >

> > > > > > > > How many months will it still be around? Can we all make

> > enough

> > > > > of

> > > > > > > a

> > > > > > > > difference in questioning AS, and getting lame replies.

Then

> > > > > > > forwarded

> > > > > > > > to various media outlets, AS refusal to talk.

> > > > > > > > Can we actually get records of their total contributions

> > each

> > > > > year

> > > > > > > and

> > > > > > > > which organization?

> > > > > > > > Any other suggestions?

> > > > > > > > I know we need to form other groups to raise money - I

just

> > > > > feel AS

> > > > > > > is

> > > > > > > > sucking so much out of the General Public that many are

> > blinded

> > > > > who

> > > > > > > to

> > > > > > > > donate to.

> > > > > > > > We need some ideas, people who can give time, and

services

> > to

> > > > > put

> > > > > > > the

> > > > > > > > attention back where it should be --on our children.

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Children who are seen by DAN! practitioners are having their progress

well-documented. Progress is relative, but I assume most parents, like

myself, consider our kids as recovery-in-progress kids.

>From: " martinx2us " <martyx2@...>

>Reply-EOHarm

>EOHarm

>Subject: Re: Wagers for AS shuting down??

>Date: Mon, 02 Jul 2007 01:53:34 -0000

>

>

>I understand but seriousely given 's staus of late, would't it be

>powerful if she could documemnt her son's success. The sceptics always

>complain of annectodat stories and this could be a chance to showcase a

>success if it truly is. Of course it is up to but it seems that

>she has a golden oppertunity to help many more.

>

>Thoughts?

>

>Marty

>

>

>

> > > > > > > > >

> > > > > > > > > How many months will it still be around? Can we all make

> > > enough

> > > > > > of

> > > > > > > > a

> > > > > > > > > difference in questioning AS, and getting lame replies.

>Then

> > > > > > > > forwarded

> > > > > > > > > to various media outlets, AS refusal to talk.

> > > > > > > > > Can we actually get records of their total contributions

> > > each

> > > > > > year

> > > > > > > > and

> > > > > > > > > which organization?

> > > > > > > > > Any other suggestions?

> > > > > > > > > I know we need to form other groups to raise money - I

>just

> > > > > > feel AS

> > > > > > > > is

> > > > > > > > > sucking so much out of the General Public that many are

> > > blinded

> > > > > > who

> > > > > > > > to

> > > > > > > > > donate to.

> > > > > > > > > We need some ideas, people who can give time, and

>services

> > > to

> > > > > > put

> > > > > > > > the

> > > > > > > > > attention back where it should be --on our children.

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

>

>

_________________________________________________________________

Picture this – share your photos and you could win big!

http://www.GETREALPhotoContest.com?ocid=TXT_TAGHM & loc=us

[Guest guest]

I appreciate what you say but the more that is documented for public

review, the better off we will all be.

Good luck

Marty

> > > > > > > > > >

> > > > > > > > > > How many months will it still be around? Can we all

make

> > > > enough

> > > > > > > of

> > > > > > > > > a

> > > > > > > > > > difference in questioning AS, and getting lame

replies.

> >Then

> > > > > > > > > forwarded

> > > > > > > > > > to various media outlets, AS refusal to talk.

> > > > > > > > > > Can we actually get records of their total

contributions

> > > > each

> > > > > > > year

> > > > > > > > > and

> > > > > > > > > > which organization?

> > > > > > > > > > Any other suggestions?

> > > > > > > > > > I know we need to form other groups to raise money -

I

> >just

> > > > > > > feel AS

> > > > > > > > > is

> > > > > > > > > > sucking so much out of the General Public that many

are

> > > > blinded

> > > > > > > who

> > > > > > > > > to

> > > > > > > > > > donate to.

> > > > > > > > > > We need some ideas, people who can give time, and

> >services

> > > > to

> > > > > > > put

> > > > > > > > > the

> > > > > > > > > > attention back where it should be --on our children.

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> >

> >

>

> _________________________________________________________________

> Picture this – share your photos and you could win big!

> http://www.GETREALPhotoContest.com?ocid=TXT_TAGHM & loc=us

>

[Guest guest]

Marty,

I have met . I

would encourage you to meet her as well. Mean spirited does NOT describe this woman.

If we had more s

in this world our kids would have more advocates who care. If you were

connected w/ NAAR – get to know .

It may be a really good

thing. may be the reason for change in the right direction (no pun

intended.)

All my best,

A jeffs mom

>

>

>

> On 7/1/07 3:43 PM, " martinx2us " martyx2@... wrote:

>

> >

> >

> >

> >

> > Ellen, let break down some of these issues to see where we stand.

> >

> > First I see 's statement as arrogant and mean spirited as I

believe many

> > of her comments are. Why should parents like myself – former

Trustee of NAAR

> > step aside? What about an approach of leveraging off the experience

of the

> > past and working in collaboration with those who welcome it? Yes I

dare to

> > say on this list that I don't like the way delivers her

message. I

> > believe she could have accomplished more approaching the matter in a

different

> > way, but that is only my opinion.

> >

> > The problem I have with the whole argument of NAAR, CAN and AS is

that a

> > recognition needs to accepted that some do have a legitimate and

different

> > philosophy on the value of genetic research. That is not to diminish

the

> > value of good environmental research.

> >

> > You state " When organizations like NAAR and CAN who were getting

money from

> > sponsors/contributors (and we all know who some of these

sponsors

are!), they

> > steer research in the direction that these contributors want them

to. This is

> > a fact. Who were some of NAAR's contributors " Isn't that exactly

what you

> > rate asking for now? To steer the research in the direction you

want? The

> > simple fact is that contributions can be " restricted " for a

certain

use. I am

> > aware of some that have said " genetic " and others for

different

purposes.

> > This is always an option if one wishes to contribute to AS or any

other

> > organization.

> >

> > Finally you state " And maybe just maybe if the

" pioneers " were doing

research

> > into environmental causes as well as genetic research, a whole bunch

of kids

> > like my son for instance never would have been poisoned by

vaccines. " I

> > really take umbrage with that statement. That is exceptionally

unfair and

> > makes an unproven presumption.

> >

> > At the end of the day it would be nice if all the finger pointing

would stop

> > and we all could respect individual choices as to where best to give

their

> > donations. Of course I encourage you and everyone else to get out a

positive

> > message of where you believe it is best so as to offer additional

choices to

> > many. And if you believe AS is duping people, I think you have an

obligation

> > to speak out about it.

> >

> > Marty

> >

> >

> >

> >

> >

> >>>>> > > > >

> >>>>> > > > > How many months will it still be

around? Can we all make

enough

> >> > of

> >>>> > > > a

> >>>>> > > > > difference in questioning AS, and

getting lame replies.

Then

> >>>> > > > forwarded

> >>>>> > > > > to various media outlets, AS

refusal to talk.

> >>>>> > > > > Can we actually get records of

their total contributions

each

> >> > year

> >>>> > > > and

> >>>>> > > > > which organization?

> >>>>> > > > > Any other suggestions?

> >>>>> > > > > I know we need to form other

groups to raise money - I

just

> >> > feel AS

> >>>> > > > is

> >>>>> > > > > sucking so much out of the

General Public that many are

blinded

> >> > who

> >>>> > > > to

> >>>>> > > > > donate to.

> >>>>> > > > > We need some ideas, people who

can give time, and

services to

> >> > put

> >>>> > > > the

> >>>>> > > > > attention back where it should be

--on our children.

> >>>>> > > > >

> >>>> > > >

> >>> > >

> >> >

> >

> >

>

[Guest guest]

To me, this is just exactly what everyone is saying is wrong with AS.

SURE 's documentation would be great, but if her parents really

wanted to do something to help us, they (AS) would pay for ALL of our

documentation to be put together and presented in a way that would

prove our case and help everyone else. Doesn't it seem like that

would have been the goal of the s in the first place when they

started AS? It's not like 's story is unusual, there's lot of us

that a large study could be based on. Instead, AS has chosen to try

and figure out whether melatonin might just fix it all.

> > > > > > > > >

> > > > > > > > > How many months will it still be around? Can we all make

> > > enough

> > > > > > of

> > > > > > > > a

> > > > > > > > > difference in questioning AS, and getting lame replies.

> Then

> > > > > > > > forwarded

> > > > > > > > > to various media outlets, AS refusal to talk.

> > > > > > > > > Can we actually get records of their total contributions

> > > each

> > > > > > year

> > > > > > > > and

> > > > > > > > > which organization?

> > > > > > > > > Any other suggestions?

> > > > > > > > > I know we need to form other groups to raise money - I

> just

> > > > > > feel AS

> > > > > > > > is

> > > > > > > > > sucking so much out of the General Public that many are

> > > blinded

> > > > > > who

> > > > > > > > to

> > > > > > > > > donate to.

> > > > > > > > > We need some ideas, people who can give time, and

> services

> > > to

> > > > > > put

> > > > > > > > the

> > > > > > > > > attention back where it should be --on our children.

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I hear you and agree 's story is not unusual. My point however was

that given how the media operates today along with 's high

visibility, her story and documentation might be more powerful and

revealing to the masses. Who pays attention to your kid or mine? But

I would bet the media would pick up on her story if she chose to supply

the documentation.

Marty

> > > > > > > > > >

> > > > > > > > > > How many months will it still be around? Can we all

make

> > > > enough

> > > > > > > of

> > > > > > > > > a

> > > > > > > > > > difference in questioning AS, and getting lame

replies.

> > Then

> > > > > > > > > forwarded

> > > > > > > > > > to various media outlets, AS refusal to talk.

> > > > > > > > > > Can we actually get records of their total

contributions

> > > > each

> > > > > > > year

> > > > > > > > > and

> > > > > > > > > > which organization?

> > > > > > > > > > Any other suggestions?

> > > > > > > > > > I know we need to form other groups to raise money -

I

> > just

> > > > > > > feel AS

> > > > > > > > > is

> > > > > > > > > > sucking so much out of the General Public that many

are

> > > > blinded

> > > > > > > who

> > > > > > > > > to

> > > > > > > > > > donate to.

> > > > > > > > > > We need some ideas, people who can give time, and

> > services

> > > > to

> > > > > > > put

> > > > > > > > > the

> > > > > > > > > > attention back where it should be --on our children.

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I only partly agree- the media is telling HALF of ’s story- the first half (dx).

They are not talking about treatments at all- please correct me if I’m wrong.

Thanks,

Ps- and when I say “they” I mean mainstream media

(not david kirby, JFK Jr, Autism Media, etc.)

On 7/2/07 11:49 AM, " martinx2us " <martyx2@...> wrote:

I hear you and agree 's story is not unusual. My point however was

that given how the media operates today along with 's high

visibility, her story and documentation might be more powerful and

revealing to the masses. Who pays attention to your kid or mine? But

I would bet the media would pick up on her story if she chose to supply

the documentation.

Marty

> > > > > > > > > >

> > > > > > > > > > How many months will it still be around? Can we all

make

> > > > enough

> > > > > > > of

> > > > > > > > > a

> > > > > > > > > > difference in questioning AS, and getting lame

replies.

> > Then

> > > > > > > > > forwarded

> > > > > > > > > > to various media outlets, AS refusal to talk.

> > > > > > > > > > Can we actually get records of their total

contributions

> > > > each

> > > > > > > year

> > > > > > > > > and

> > > > > > > > > > which organization?

> > > > > > > > > > Any other suggestions?

> > > > > > > > > > I know we need to form other groups to raise money -

I

> > just

> > > > > > > feel AS

> > > > > > > > > is

> > > > > > > > > > sucking so much out of the General Public that many

are

> > > > blinded

> > > > > > > who

> > > > > > > > > to

> > > > > > > > > > donate to.

> > > > > > > > > > We need some ideas, people who can give time, and

> > services

> > > > to

> > > > > > > put

> > > > > > > > > the

> > > > > > > > > > attention back where it should be --on our children.

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

you are absolutely correct. The part I am not aware of is

if ever tried to show them (media) any documentation of her

success. Does anyone know?

Marty

> >>>>>>>>>>> > > > > > > > > > >

> >>>>>>>>>>> > > > > > > > > > > How many months will it still be

around? Can we

> all

> > make

> >>>>> > > > > enough

> >>>>>>>> > > > > > > > of

> >>>>>>>>>> > > > > > > > > > a

> >>>>>>>>>>> > > > > > > > > > > difference in questioning AS, and

getting lame

> > replies.

> >>> > > Then

> >>>>>>>>>> > > > > > > > > > forwarded

> >>>>>>>>>>> > > > > > > > > > > to various media outlets, AS refusal

to talk.

> >>>>>>>>>>> > > > > > > > > > > Can we actually get records of their

total

> > contributions

> >>>>> > > > > each

> >>>>>>>> > > > > > > > year

> >>>>>>>>>> > > > > > > > > > and

> >>>>>>>>>>> > > > > > > > > > > which organization?

> >>>>>>>>>>> > > > > > > > > > > Any other suggestions?

> >>>>>>>>>>> > > > > > > > > > > I know we need to form other groups to

raise

> money -

> > I

> >>> > > just

> >>>>>>>> > > > > > > > feel AS

> >>>>>>>>>> > > > > > > > > > is

> >>>>>>>>>>> > > > > > > > > > > sucking so much out of the General

Public that

> many

> > are

> >>>>> > > > > blinded

> >>>>>>>> > > > > > > > who

> >>>>>>>>>> > > > > > > > > > to

> >>>>>>>>>>> > > > > > > > > > > donate to.

> >>>>>>>>>>> > > > > > > > > > > We need some ideas, people who can

give time,

> and

> >>> > > services

> >>>>> > > > > to

> >>>>>>>> > > > > > > > put

> >>>>>>>>>> > > > > > > > > > the

> >>>>>>>>>>> > > > > > > > > > > attention back where it should be --on

our

> children.

> >>>>>>>>>>> > > > > > > > > > >

> >>>>>>>>>> > > > > > > > > >

> >>>>>>>>> > > > > > > > >

> >>>>>>>> > > > > > > >

> >>>>>>> > > > > > >

> >>>>>> > > > > >

> >>>>> > > > >

> >>>> > > >

> >>> > >

> >> >

> >

> >

> >

>

[Guest guest]

Last year I knew what DR had taken her son to see, and was

doing IV chelation.

I am not going to say the DR's name - but he is a really good DAN DR.

and has not spoken at the DAN Conf.

maybe using him still or someone else.

I do not know her personally,and respect her privacy.

I would like to leave it at that.

Cannot stand AS however!!

In EOHarm , christine <christine@...> wrote:

>

> I only partly agree- the media is telling HALF of ¹s story-

the first

> half (dx).

> They are not talking about treatments at all- please correct me if

I¹m

> wrong.

>

> Thanks,

>

>

> Ps- and when I say ³they² I mean mainstream media

> (not david kirby, JFK Jr, Autism Media, etc.)

>

>

> On 7/2/07 11:49 AM, " martinx2us " <martyx2@...> wrote:

>

> >

> >

> >

> >

> >

> > I hear you and agree 's story is not unusual. My point

however was

> > that given how the media operates today along with 's high

> > visibility, her story and documentation might be more powerful and

> > revealing to the masses. Who pays attention to your kid or

mine? But

> > I would bet the media would pick up on her story if she chose to

supply

> > the documentation.

> >

> > Marty

> >

> >

> >>>>>>>>>>> > > > > > > > > > >

> >>>>>>>>>>> > > > > > > > > > > How many months will it still be

around? Can we

> all

> > make

> >>>>> > > > > enough

> >>>>>>>> > > > > > > > of

> >>>>>>>>>> > > > > > > > > > a

> >>>>>>>>>>> > > > > > > > > > > difference in questioning AS, and

getting lame

> > replies.

> >>> > > Then

> >>>>>>>>>> > > > > > > > > > forwarded

> >>>>>>>>>>> > > > > > > > > > > to various media outlets, AS

refusal to talk.

> >>>>>>>>>>> > > > > > > > > > > Can we actually get records of

their total

> > contributions

> >>>>> > > > > each

> >>>>>>>> > > > > > > > year

> >>>>>>>>>> > > > > > > > > > and

> >>>>>>>>>>> > > > > > > > > > > which organization?

> >>>>>>>>>>> > > > > > > > > > > Any other suggestions?

> >>>>>>>>>>> > > > > > > > > > > I know we need to form other groups

to raise

> money -

> > I

> >>> > > just

> >>>>>>>> > > > > > > > feel AS

> >>>>>>>>>> > > > > > > > > > is

> >>>>>>>>>>> > > > > > > > > > > sucking so much out of the General

Public that

> many

> > are

> >>>>> > > > > blinded

> >>>>>>>> > > > > > > > who

> >>>>>>>>>> > > > > > > > > > to

> >>>>>>>>>>> > > > > > > > > > > donate to.

> >>>>>>>>>>> > > > > > > > > > > We need some ideas, people who can

give time,

> and

> >>> > > services

> >>>>> > > > > to

> >>>>>>>> > > > > > > > put

> >>>>>>>>>> > > > > > > > > > the

> >>>>>>>>>>> > > > > > > > > > > attention back where it should be --

on our

> children.

> >>>>>>>>>>> > > > > > > > > > >

> >>>>>>>>>> > > > > > > > > >

> >>>>>>>>> > > > > > > > >

> >>>>>>>> > > > > > > >

> >>>>>>> > > > > > >

> >>>>>> > > > > >

> >>>>> > > > >

> >>>> > > >

> >>> > >

> >> >

> >

> >

> >

>

[Guest guest]

As one who was never involved in NAAR or AS, I think what she said was

not arrogant or mean-spirited. What I took she was saying is there

hasn't been enough progress and if those who have been using the

research money in a certain direction can't change course, then let

someone else. IMO, her statement wasn't toward people, it was toward

answers. She even came back & said it wasn't her intent. Saying

answers need to be found isn't to me arrogant.

I totally understand what your saying that grant money often has

stipulations attached and genetic does have a place. But, only a part

of the place. As I've said before, no more than 33% genetic, at least

33% environmental, and 33% behavioral, then you'll have a good

blending of how to help the kids.

Debi

[Guest guest]

Deb, I hear what you are saying and accept that the comment was not

intended as I took it.

I think we can all agree that saying answers need to be found isn't

arrogant. In fact that is precisely what we all want.

Marty

>

> As one who was never involved in NAAR or AS, I think what she said was

> not arrogant or mean-spirited. What I took she was saying is there

> hasn't been enough progress and if those who have been using the

> research money in a certain direction can't change course, then let

> someone else. IMO, her statement wasn't toward people, it was toward

> answers. She even came back & said it wasn't her intent. Saying

> answers need to be found isn't to me arrogant.

>

> I totally understand what your saying that grant money often has

> stipulations attached and genetic does have a place. But, only a part

> of the place. As I've said before, no more than 33% genetic, at least

> 33% environmental, and 33% behavioral, then you'll have a good

> blending of how to help the kids.

>

> Debi

>

[Guest guest]

Marty, I am new and don't know you, but I agree. The thing that struck me about the NY Times coverage( and inadvertently led me to this group) was that for three years, while I had been attending Autism One conferences and reading as much science as I could digest, the NY Times had never thought there was any thing newsworthy. But let a rich, celebrity family have hurt feelings over the mercury controversy and it is front page news. I haven't seen on TV, but I'm hoping she is young and gorgeous and will look terrific on the cover of People Magazine. Now we might be getting somewhere. Re: Wagers for AS shuting down?? I hear you and agree 's story is not unusual. My point however was that given how the media operates today along with 's high visibility, her story and documentation might be more powerful and revealing to the masses. Who pays attention to your kid or mine? But I would bet the media would pick up on her story if she chose to supply the documentation. Marty > > > > > > > > > > > > > > > > > > > > How many months will it still be around? Can we all make > > > > enough > > > > > > > of > > > > > > > > > a > > > > > > > > > > difference in questioning AS, and

getting lame replies. > > Then > > > > > > > > > forwarded > > > > > > > > > > to various media outlets, AS refusal to talk. > > > > > > > > > > Can we actually get records of their total contributions > > > > each > > > > > > > year > > > > > > > > > and > > > > > > > > > > which organization? > > > > > > > > > > Any other suggestions? > > > > > > > > > > I know we need to form other groups to raise money - I > > just > > > > > > > feel AS > > > > > > > > > is > > > > > > > > > > sucking so much out of the General Public that many are > > > > blinded > >

> > > > > who > > > > > > > > > to > > > > > > > > > > donate to. > > > > > > > > > > We need some ideas, people who can give time, and > > services > > > > to > > > > > > > put > > > > > > > > > the > > > > > > > > > > attention back where it should be --on our children. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

Don't be flakey. Get for Mobile and always stay connected to friends.

[Guest guest]

I am trying to understand various factions in the autism community.

You stated you were never involved in NAAR or AS. I assume you mean

you never raised money for either organization, if this is the case

why do you think you have the right to tell them how to spend their

money and what direction their research dollars should go?

One of the great things about this country is the capitalist system.

If you earn the money, it is yours to spend as you see fit, within the

law.

Please dont respond in anger (as many on this board do), I am only

trying to understand.

Pamela

>

> As one who was never involved in NAAR or AS, I think what she said was

> not arrogant or mean-spirited. What I took she was saying is there

> hasn't been enough progress and if those who have been using the

> research money in a certain direction can't change course, then let

> someone else. IMO, her statement wasn't toward people, it was toward

> answers. She even came back & said it wasn't her intent. Saying

> answers need to be found isn't to me arrogant.

>

> I totally understand what your saying that grant money often has

> stipulations attached and genetic does have a place. But, only a part

> of the place. As I've said before, no more than 33% genetic, at least

> 33% environmental, and 33% behavioral, then you'll have a good

> blending of how to help the kids.

>

> Debi

>

[Guest guest]

Do YOU have a child on the autism spectrum, Pamela?

> >

> > As one who was never involved in NAAR or AS, I think what she

said was

> > not arrogant or mean-spirited. What I took she was saying is there

> > hasn't been enough progress and if those who have been using the

> > research money in a certain direction can't change course, then

let

> > someone else. IMO, her statement wasn't toward people, it was

toward

> > answers. She even came back & said it wasn't her intent. Saying

> > answers need to be found isn't to me arrogant.

> >

> > I totally understand what your saying that grant money often has

> > stipulations attached and genetic does have a place. But, only a

part

> > of the place. As I've said before, no more than 33% genetic, at

least

> > 33% environmental, and 33% behavioral, then you'll have a good

> > blending of how to help the kids.

> >

> > Debi

> >

>

[Guest guest]

The autism community is starting to wage war on itself from within like

the deaf community does (you aren't *really* deaf if you use an

implant, you aren't accepting as a signing interpreter unless you are a

child of a deaf adult relative who grew up around a deaf person, etc.).

She asked an honest question, and is looking for answers (heck, aren't

we all!). She even asked for others not to respond in anger, and while

this isn't angry it certainly has a tone of condescension in it (as if

she wouldn't be questioning anything if she DID have a child on the

spectrum).

We should all play nice, the more we infight the longer it will take to

reach any common goals.

searchingforserenity111 wrote:

Do YOU have a child on the autism spectrum, Pamela?

>

> I am trying to understand various factions in the autism community.

> You stated you were never involved in NAAR or AS. I assume you mean

> you never raised money for either organization, if this is the case

> why do you think you have the right to tell them how to spend their

> money and what direction their research dollars should go?

>

> One of the great things about this country is the capitalist

system.

> If you earn the money, it is yours to spend as you see fit, within

the

> law.

>

> Please dont respond in anger (as many on this board do), I am only

> trying to understand.

>

> Pamela

[Guest guest]

People would like to be clear about how a non-profit organization

spends it's money BEFORE they raise money for it. That's why there

is a discussion about where their money goes.

> >

> > As one who was never involved in NAAR or AS, I think what she

said was

> > not arrogant or mean-spirited. What I took she was saying is

there

> > hasn't been enough progress and if those who have been using the

> > research money in a certain direction can't change course, then

let

> > someone else. IMO, her statement wasn't toward people, it was

toward

> > answers. She even came back & said it wasn't her intent. Saying

> > answers need to be found isn't to me arrogant.

> >

> > I totally understand what your saying that grant money often has

> > stipulations attached and genetic does have a place. But, only a

part

> > of the place. As I've said before, no more than 33% genetic, at

least

> > 33% environmental, and 33% behavioral, then you'll have a good

> > blending of how to help the kids.

> >

> > Debi

> >

>

[Guest guest]

Hopefully the new 990 forms will be instrumental in opening up that

line of spending to the public.

kimsense wrote:

People would like to be clear about how a non-profit organization

spends it's money BEFORE they raise money for it. That's why there

is a discussion about where their money goes.

[Guest guest]

Oh puhhhlez,

It was simply a question to Pamela, just as she is asking questions of

the group. I'm no kid who frickin needs to be told how to " play nice " .

Save it for your kids.

It is very possible that she DOES NOT have a child on the spectrum -

like so many of the infiltrators on here who have NOT, and have just

come on here to stir up trouble.

> > >

> > > I am trying to understand various factions in the autism community.

> > > You stated you were never involved in NAAR or AS. I assume you mean

> > > you never raised money for either organization, if this is the case

> > > why do you think you have the right to tell them how to spend their

> > > money and what direction their research dollars should go?

> > >

> > > One of the great things about this country is the capitalist system.

> > > If you earn the money, it is yours to spend as you see fit, within

> > the

> > > law.

> > >

> > > Please dont respond in anger (as many on this board do), I am only

> > > trying to understand.

> > >

> > > Pamela

> >

>

[Guest guest]

When one asks an innocent question, one does not USE ALL CAPS to

insinuate an entirely different meeting.

I do have an ASD child, so please do not tell me to save it for my

children. He doesn't understand it. I'm not sure I understand the

hostility either. Who cares about "infiltrators", if your message is

truth and you have evidence, offer up the evidence so one can make an

informed decision. It isn't like an infiltrator is going to unabomb

the group for Pete's sake.

Thanks for making it clear the rudeness was not just a slip.

searchingforserenity111 wrote:

Oh puhhhlez,

It was simply a question to Pamela, just as she is asking questions of

the group. I'm no kid who frickin needs to be told how to "play nice".

Save it for your kids.

It is very possible that she DOES NOT have a child on the spectrum -

like so many of the infiltrators on here who have NOT, and have just

come on here to stir up trouble.

> > >

> > > I am trying to understand various factions in the autism

community.

> > > You stated you were never involved in NAAR or AS. I

assume you mean

> > > you never raised money for either organization, if this

is the case

> > > why do you think you have the right to tell them how to

spend their

> > > money and what direction their research dollars should

go?

> > >

> > > One of the great things about this country is the

capitalist system.

> > > If you earn the money, it is yours to spend as you see

fit, within

> > the

> > > law.

> > >

> > > Please dont respond in anger (as many on this board do),

I am only

> > > trying to understand.

> > >

> > > Pamela

> >

>

[Guest guest]

I happen to agree with most of Pamela's point. People do have a right

to spend their money as they see fit. Other people, of course, have a

right to complain about their choices. Complaining does serve a

function of raising awareness of the public about the choices

available to them, specifically here about whee to donate to autism

research and treatments.

Complaining alone is a losers game, however. Instead of us spending

so much energy whining about how Autism Speaks spends their money, we

should focus our energy on creating positive alternatives. This is

happening. Autism United, the Autism Research Institute and the NAA

all are focusing on raising funds for functional research. Local

groups like TACA and FEAT, for example, raise money for the individual

treatment advocacy of damaged children. We have better places to go

than AS. It's better to compete, than complain. Better chance for

getting the results we want.

As for factions, there seems to be emerging two basic camps within the

autism community: those who suspect vaccines as the culprit behind the

autism epidemic, and those who defend vaccines. There is of course,

many trying to bridge or overlap the two positions, which ultimately

are mutually exclusive.

Lenny

> >

> > As one who was never involved in NAAR or AS, I think what she said was

> > not arrogant or mean-spirited. What I took she was saying is there

> > hasn't been enough progress and if those who have been using the

> > research money in a certain direction can't change course, then let

> > someone else. IMO, her statement wasn't toward people, it was toward

> > answers. She even came back & said it wasn't her intent. Saying

> > answers need to be found isn't to me arrogant.

> >

> > I totally understand what your saying that grant money often has

> > stipulations attached and genetic does have a place. But, only a part

> > of the place. As I've said before, no more than 33% genetic, at least

> > 33% environmental, and 33% behavioral, then you'll have a good

> > blending of how to help the kids.

> >

> > Debi

> >

>

[Guest guest]

This is why this list has hosts whose job it is to referee the ruffled

feathers (and worse) amongst list members. Please people, do not

burden yourselves with correcting the perceived " polite " missteps of

others. If you have a complaint about behavior, then

1. Make a private email to the " offender " and ask for a clarification.

or

2. Contact myself or list co-host heather king and make your concerns

known to us. We will try to resolve the matter privately and with

dignity.

Correcting the behaviors of others in public is rude and usually

counter-productive.

Lenny Schafer

EOHarm list co-host.

> > > >

> > > > I am trying to understand various factions in the autism

community.

> > > > You stated you were never involved in NAAR or AS. I assume you

mean

> > > > you never raised money for either organization, if this is the

case

> > > > why do you think you have the right to tell them how to spend

their

> > > > money and what direction their research dollars should go?

> > > >

> > > > One of the great things about this country is the capitalist

system.

> > > > If you earn the money, it is yours to spend as you see fit, within

> > > the

> > > > law.

> > > >

> > > > Please dont respond in anger (as many on this board do), I am only

> > > > trying to understand.

> > > >

> > > > Pamela

> > >

> >

>