Re: Wagers for AS shuting down??

[Guest guest]

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]

Unfortunately this is much like the way their " partners in crime " CAN

and NAAR were in regards to sucking money from families with affected

children and adults and the general public and then

wasting money raised for useless autism research. Unfortunately it

took AS swallowing those two org's into their own to get rid of

them. If this didnt happen, NAAR and CAN would still be in business

along side AS doing the same crappy research.

Until parents of autistic children acknowledge this fact and the

general public is made aware of this fact and STOP raising money for

AS....AS isnt going to go anywhere.

But if anyone has ideas on what we could do....Im in!

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.

>

[Guest guest]

Ellen for sake of fairness NAAR did not suck money from anyone. Individuals made voluntary donations. Like it or not people are free to contribute to any organization they wish.

On another note, I feel sorry that you believe NAAR funded all useless research. I don't recall hearing from you in the early days when NAAR was first started. I will tell you I am proud of what NAAR did in the early days when virtually nobody else was out there funding pilot grants to spur further research into autism.

While it is OK to disagree with the philosophy of any organization and Monday morning quarterback, it is too bad you don't have the decency to acknowledge the good that NAAR did when it was first established.

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 am going to see if I can work on getting this. I am going to bring it up later today, I might have the contacts that we can get this information. I am not going to promise anything though. However I am learning quickly being on a political staff does have it's benefits. GeorgaOn 7/1/07, Ellen Sweeney <support4autism@...> wrote:

Unfortunately this is much like the way their " partners in crime " CAN

and NAAR were in regards to sucking money from families with affected

children and adults and the general public and then

wasting money raised for useless autism research. Unfortunately it

took AS swallowing those two org's into their own to get rid of

them. If this didnt happen, NAAR and CAN would still be in business

along side AS doing the same crappy research.

Until parents of autistic children acknowledge this fact and the

general public is made aware of this fact and STOP raising money for

AS....AS isnt going to go anywhere.

But if anyone has ideas on what we could do....Im in!

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.

>

-- Georga HackworthSenior Advisor Will Griffith for Congresshttp://www.willforcongress.9k.com/

[Guest guest]

Was the persons who made the " voluntary " donation mislead, deceived

or lied to.........was the nonprofits mission statement a bunch of

nonsense?

Our next generation won't care if the dreams of the nonprofit are

not the reality. All our children will have to deal w/is the actual

outcome.....the likly train wreck of mass autism.

No sorrow needed.

> > >

> > > 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 don't know much about what research NAAR did, but I'm sure it was important. Sometimes the research that doesn't show a correlation can be just as important in eliminating possibilities, as long as it's documented and we don't keep on doing the same research. What is frustrating is that AS keeps going down the genetics path almost exclusively. OK yes, there must be some genetic component, but that doesn't even begin to explain this issue. Even if they funded genetics/environment 50/50 it would be a start, but this latest round of research is almost entirely genetic AGAIN. They're not being strategic scientists and adjusting hypotheses based on the results. And I do think they're now misleading us that they're taking the money that the autism community is raising in good faith, for autism research, and not spending it on true environmental research. I'm not

criticizing the past but we've got to move forward in the future in another direction. Marie martinx2us <martyx2@...> wrote: Ellen for sake of fairness NAAR did not suck money from anyone. Individuals made voluntary donations. Like it or not people are free to contribute to any organization they wish. On

another note, I feel sorry that you believe NAAR funded all useless research. I don't recall hearing from you in the early days when NAAR was first started. I will tell you I am proud of what NAAR did in the early days when virtually nobody else was out there funding pilot grants to spur further research into autism. While it is OK to disagree with the philosophy of any organization and Monday morning quarterback, it is too bad you don't have the decency to acknowledge the good that NAAR did when it was first established. 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.> >>

Building a website is a piece of cake. Small Business gives you all the tools to get online.

[Guest guest]

The simple and truthful answer is NO. They were neither misled or

fooled inot anything.

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]

Yes I hear you. My comments went to NAAR in the past. Your comments

are fair relative to AS as of today. I read their mission statement,

position statements and all the chatter as of late and don't blame you

for questioning and challenging AS.

Thanks

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.

> > >

> >

>

>

>

>

>

>

>

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

> Building a website is a piece of cake.

> Small Business gives you all the tools to get online.

>

[Guest guest]

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.

> > >

> >

>

[Guest guest]

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]

First of all, I have spoken out locally to parents about AS and have

talked about a dozen of them from participating in an upcoming walk

for AS in a town local to me....and I am damn proud for doing so.....

I feel 's words were not mean-spirited....but when there is

organizations spending literally millions on research that has been

and is limited in its outcomes, parents like her and myself tend to

get frustrated when certain powers that totally discount all of the

proof that we have that our children are mercury-poisoned (labs,

definitive progress during chelation and biomedical)....one person in

particular comes to mind and he is from the former SAB of NAAR and

now sits on the SAB for AS....Dr Shih....another member of

NAAR has been quoted by a member of his own family as saying parents

like myself and are " delusional " for believing that our

children were poisoned by vaccines (Ask Ray Gallup who this is).....

this doesnt sound like two examples of individuals that

welcome " working in collaboration " with scientists looking into the

vaccine and autism connection to me.....

You wont change my opinion about NAAR, CAN, or AS.....this is my

opinion and every one is entitled to one.....But as a former trustee

of NAAR I can understand why you are so vehemently defending their

action, or inaction towards all realms of research....

I think we should just agree to disagree.....

all the best,

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.

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I think it is fine we can agree to disagree but to be fair we do not

disagree on everything. I left NAAR with many ill feelings at the end

and I agree with your characterization of Andy Shih. I believe he has

nothing but contempt for parents of children with autism and is a major

roadblock to anything good happening. I have previously stated that I

believe one of the dumbest things AS did was to bring along Andy as CSO.

As for NAAR, it was far from perfect but believe it was a superb

organization in its early days. " Early days " being the critical

phrase. That being said I respect that you are entitled to your point

of view as well.

One last thought, Ray and I speak so I am familiar with what you are

saying. My point was to try first to find those who are willing to

collaborate before closing the door. Whether that can occur remans to

be seen.

Regards,

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]

Initially, it was the best in a list of poorly/mis understood theories.

Now, just plain wrong.

Consequently, in the way and counterproductive.

Re: Wagers for AS shuting down??

Ellen for sake of fairness NAAR did not suck money from anyone. Individuals made voluntary donations. Like it or not people are free to contribute to any organization they wish.

On another note, I feel sorry that you believe NAAR funded all useless research. I don't recall hearing from you in the early days when NAAR was first started. I will tell you I am proud of what NAAR did in the early days when virtually nobody else was out there funding pilot grants to spur further research into autism.

While it is OK to disagree with the philosophy of any organization and Monday morning quarterback, it is too bad you don't have the decency to acknowledge the good that NAAR did when it was first established.

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 pointing the finger at just continues the circle of finger

pointing, doesn't it? If I were I would do the same thing she

has done. She sat and watched quietly as she chose the treatments she

did for Christian and when they STARTED HELPING, she knew the answer

for SO MANY of our children was right in front of her. She started

shouting from the rooftops...she realizes that while others play games

and politics MORE CHILDREN are being harmed everyday and it has to

stop. NOW. We need to help our nations' children and if some adults

feelings have to get hurt, SO WHAT.

> > > > >

> > > > > 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]

> What is frustrating is that AS keeps going down the genetics path

almost exclusively. OK yes, there must be some genetic component, but

that doesn't even begin to explain this issue. Even if they funded

genetics/environment 50/50 it would be a start, but this latest round

of research is almost entirely genetic AGAIN. They're not being

strategic scientists and adjusting hypotheses based on the results.

If you look at the announcement on their web site and read the

listings of the funded research 14 out of 52 projects have a genetic

component. The rest are looking and environment, epidemiology,

treatment, etc. It looks like a fairly well rounded group of studies.

Pamela

[Guest guest]

absolutely not when they AS are benefiting from their grand sons pain relief. When Christian's symptoms are the same as my sons and they are sitting on that knowledge and want help any other children. Maybe its his stock at GE after all they would not want it proven their product caused any of this damage oh! in case you did not know GE owns a thimerosal facility. If they AS are in it for the right reason. Then If true science goes were the evidence leads why want they

share that christian is speaking after chealation and he is sleeping after pentasin 6mp after all I thought they were going to declare war on autism. It seems to me they are doing what they were created for steering away from a pharma cause. Its like if you lose your wallet in the bedroom but you are looking for it every where but the bed room. It should be all over the press that Bob 's grand child is getting better instead they are hiding it from the public and he should be touting DR.Wakefield was right and helping out a

courageous heroinstead of letting him be persecuted by a corrupted system here and abroad.Ellen Sweeney <support4autism@...> wrote: First of all, I have spoken out locally to parents about AS and have talked about a dozen of them from participating in an upcoming walk for AS in a town local to me....and I am damn proud for doing so.....I feel 's words were not mean-spirited....but when there is

organizations spending literally millions on research that has been and is limited in its outcomes, parents like her and myself tend to get frustrated when certain powers that totally discount all of the proof that we have that our children are mercury-poisoned (labs, definitive progress during chelation and biomedical)....one person in particular comes to mind and he is from the former SAB of NAAR and now sits on the SAB for AS....Dr Shih....another member of NAAR has been quoted by a member of his own family as saying parents like myself and are "delusional" for believing that our children were poisoned by vaccines (Ask Ray Gallup who this is)..... this doesnt sound like two examples of individuals that welcome "working in collaboration" with scientists looking into the vaccine and autism connection to me.....You wont change my opinion about NAAR, CAN, or AS.....this is my opinion

and every one is entitled to one.....But as a former trustee of NAAR I can understand why you are so vehemently defending their action, or inaction towards all realms of research....I think we should just agree to disagree.....all the best,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.> > > >

>> > > >> > >> >>

[Guest guest]

If the s truly started A.S. to benifit their grandson- that

may prove how dangerous it is to be blinded by grief and plung ahead

for a cause. If you can't think clearly some one will take

advantage.

The history of autism is filled with storys of charlatans. Filled

with rainmakers that ride out of town and on to another mark. Filled

with educators that in the end didn't know what they were doing.

Attornys who wanted to make a fee. Politicians who needed to make a

name for themself. Nonprofits who started out with a good cause and

ended up service providers and gate keepers-where the budget was

more important than the people they thought they served.

I think that is what we see when we look at A.S. big money just

brings it into focus sooner.

> > > > > >

> > > > > > 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]

If Bob and Suzanne had any integrity they would walk away from

AS and expose the group for what it really is. Oh, but the $$$$$$$$

seems to get in the way. Maybe they are taking their chances with the

bouncer at the Pearly Gates.

> > > > > >

> > > > > > 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]

Pamela, I'm not seeing it the way you are. I looked at the descriptions of the studies again - I'm not just reading the AS summary of them - and I can't see one study that will help my two children with autism. Do you see one that will help your child? If you can, which one? Yes, there are some studies that are epidemiological, and those results may prove to be interesting, but we've had lots of epidemiological studies used against us. As Kirby has said repeatedly, and I totally agree, is that we need BIOLOGICAL studies. And we need a vaccinated vs. unvaccinated study, and that is certainly not on the list. Even the few treatment studies that are in the list - a melatonin double blind study to see if it helps with sleep - well, duh! any parent of a child with autism who has sleep issues will tell you that melatonin helps. That doesn't help me. I already know that. OK, how about postural sitting and how that will help - is that what we need? Yeah, I'm not waiting on that one to tell me anything useful. OK, and how about the 'treatment' of whether social skills training will help kids with Asperger's learn social skills? That's another duh, of course that training will help. No mystery there, no great scientific discovery! We already know that. Quality of life for parents of kids with autism - so is that a treatment one? I think we can all answer to how it impacts our quality of life! I mean, do we need to spend $450,000 for three years at Massachusetts General Hospital to figure that one out? Please! The Harland Winter one is interesting, but if they listened to they'd have the answers to that one. I'm talking biological, biomedical treatments!!! Sorry, don't see it on this

list. Mariepamelacares <pamelacares@...> wrote: > What is frustrating is that AS keeps going down the genetics pathalmost exclusively. OK yes, there must be some genetic component, butthat doesn't even begin to explain this issue. Even if they fundedgenetics/environment 50/50 it would be a start, but this latest roundof research is almost entirely genetic AGAIN. They're not beingstrategic scientists and adjusting hypotheses based on the

results.If you look at the announcement on their web site and read thelistings of the funded research 14 out of 52 projects have a geneticcomponent. The rest are looking and environment, epidemiology,treatment, etc. It looks like a fairly well rounded group of studies.Pamela

Ready for the edge of your seat? Check out tonight's top picks on TV.

[Guest guest]

If has the answer then may I ask what is the problem? If were that simple, then it would seem to me autism would be a non issue already. If she knows the cause and the solution then why would she care how any organization spends it research dollars? For those who feel their children were not poisoned or damaged by vaccines, do they have a right to look at other avenues?

On the other hand it would be interesting if would share the supporting evidence in terms of professional evaluations etc, that support how well the interventions she chose accomplished in curing her son. That would be a real service to the community.

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]

This is by far the best analysis I have read.

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]

Do we know if anyone submitted proposals for " biological, biomedical

treatments " . That would be very interesting to discern. The

answer to that question and the analysis of the process if some were

submitted would be very revealing.

Needless to say, it would be important to hear directly from the the

researcher rather than some here say or anecdotal stories.

Marty

>

> > What is frustrating is that AS keeps going down the genetics path

> almost exclusively. OK yes, there must be some genetic component, but

> that doesn't even begin to explain this issue. Even if they funded

> genetics/environment 50/50 it would be a start, but this latest round

> of research is almost entirely genetic AGAIN. They're not being

> strategic scientists and adjusting hypotheses based on the results.

>

> If you look at the announcement on their web site and read the

> listings of the funded research 14 out of 52 projects have a genetic

> component. The rest are looking and environment, epidemiology,

> treatment, etc. It looks like a fairly well rounded group of studies.

>

> Pamela

>

>

>

>

>

>

>

>

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

> Ready for the edge of your seat? Check out tonight's top picks on

TV.

>

[Guest guest]

I once asked a researcher if she ever applied for a NAAR great (after Marty and I had talked about this issue a few years ago).

She said it wasn’t worth her time (to fill out the long application) because the grants were so small compared to NIH.

On 7/1/07 8:42 PM, " martinx2us " <martyx2@...> wrote:

Do we know if anyone submitted proposals for " biological, biomedical

treatments " . That would be very interesting to discern. The

answer to that question and the analysis of the process if some were

submitted would be very revealing.

Needless to say, it would be important to hear directly from the the

researcher rather than some here say or anecdotal stories.

Marty

>

> > What is frustrating is that AS keeps going down the genetics path

> almost exclusively. OK yes, there must be some genetic component, but

> that doesn't even begin to explain this issue. Even if they funded

> genetics/environment 50/50 it would be a start, but this latest round

> of research is almost entirely genetic AGAIN. They're not being

> strategic scientists and adjusting hypotheses based on the results.

>

> If you look at the announcement on their web site and read the

> listings of the funded research 14 out of 52 projects have a genetic

> component. The rest are looking and environment, epidemiology,

> treatment, etc. It looks like a fairly well rounded group of studies.

>

> Pamela

>

>

>

>

>

>

>

>

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

> Ready for the edge of your seat? Check out tonight's top picks on

TV.

>

[Guest guest]

I meant to write “grant” not “great”

Sorry-

On 7/1/07 9:04 PM, " christine " <christine@...> wrote:

I once asked a researcher if she ever applied for a NAAR great (after Marty and I had talked about this issue a few years ago).

She said it wasn’t worth her time (to fill out the long application) because the grants were so small compared to NIH.

On 7/1/07 8:42 PM, " martinx2us " <martyx2@...> wrote:

Do we know if anyone submitted proposals for " biological, biomedical

treatments " . That would be very interesting to discern. The

answer to that question and the analysis of the process if some were

submitted would be very revealing.

Needless to say, it would be important to hear directly from the the

researcher rather than some here say or anecdotal stories.

Marty

>

> > What is frustrating is that AS keeps going down the genetics path

> almost exclusively. OK yes, there must be some genetic component, but

> that doesn't even begin to explain this issue. Even if they funded

> genetics/environment 50/50 it would be a start, but this latest round

> of research is almost entirely genetic AGAIN. They're not being

> strategic scientists and adjusting hypotheses based on the results.

>

> If you look at the announcement on their web site and read the

> listings of the funded research 14 out of 52 projects have a genetic

> component. The rest are looking and environment, epidemiology,

> treatment, etc. It looks like a fairly well rounded group of studies.

>

> Pamela

>

>

>

>

>

>

>

>

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

> Ready for the edge of your seat? Check out tonight's top picks on

TV.

>

[Guest guest]

I don’t think is mean spirited at all. She is frustrated, like many of us. She is very humble, doesn’t like to take credit for anything and I do not envy the position she is in. A couple of years ago my father was telling people autism was purely genetic & walked far for NAAR- but who cares? He doesn’t run some big corporation.

I also think that we (as a group) know about 1% of what goes on with the s & AS. We are all assuming things left and right. Everyone has their different views on the subject. That doesn’t mean that we shouldn’t talk about it. There is just so much work to be done. Real work, on so many different levels. I’m exhausted by the back and forth conversation and having the same conversations over and over.

Many people that I talk to in the autism community believe that there is much need in the community- and giving money to Autism Speaks for research is directly taking money away from families and their children. It’s a simple truth- just open people’s eyes to it. Give them an alternative (like we are doing with Autism United). I am hoping for the best.

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 ˆ 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.

> > > >

> > >

> >

>