Re: ASA to Participate in Press Conference/where does the ASA stand?

[Guest guest]

Look it's evident by the variation of posts that some people have

had a good experience w/ the ASA and some people haven't. Some have

done great things locally and some haven't been able to get their

phone calls returned.

I agree with Bob that the ASA has got to present a unified postion

from the top down. Either your with us or your against us or your

just here to muck up the water. Either you believe their is a

connection between autism and hg containing vaccines or you don't.

Put your money where your mouth is. Use your grant money to

investigate the link in a manner that casts not doubts on the

validity of your research, do things right.Take an honest open-

minded look and use good science. Now is the time to step up ASA. It

will be interesting to see what they do.

When the first post came out today about ASA participating in the

Kirby/Olmsted press conference I wondered if it had to do with all

the attention Autism Speaks has been getting due to the

connection? Has the emergence of Autism Speaks basically forced ASA

to do something about this issue? Just rambling thoughts, but it

seems to me Autism Speaks is stelling ASA's thunder as the premiere

autism organization. You got to admit money and influence goes along

way....

We're all not going to agree on the ASA and that's ok because we

have all had different experiences with them.

We need to respect each other's opinions, whether we agree with them

or not.

We need to find out where ASA stands as a natinal organization and

not just some disjointed group here or there who supports our issues

and are working really hard to make a difference in their respective

states or communities. I'm not belittling those efforts, just saying

it is a national organization issue that remains to be seen.

Just poking my opinionated head in,

>

> I just had a very productive conversation with an ASA Board

member - he

> points out that ASA is featuring Martha Herbert (one of the most

> innovative and progressive researchers on toxins and neurological

> injury) as a keynote speaker at its July conference in Rhode

Island,

> and other speakers on biomedical interventions, etc. This

particular

> individual has worked very hard on legislation to ban thimerosal.

So

> there is no doubt that there are ASA initiatives and people that

are

> extremely helpful and many ASA members who are on board with the

views

> of many of us on this list.

>

> That still means we ask the tough questions and push ASA to

exercise

> leadership for their membership so that we can have a unified

position

> for our kids.

>

> So the jury is out and let's watch what ASA does.

>

>

>

[Guest guest]

Well said . I wondered the same.

I see AutismSpeaks as the frontrunner for funding but have a bad feeling

that they will do the same crap with it that NAAR did so we'll end up

writing them off. CAN does their own thing, whether we agree with what they

fund or not. That leaves ASA out in cold, for money and people. AS doesn't

need them, CAN doesn't need them and the biomed people don't need them.

They are out of the loop. They need a loop. We are a big loop.

If they can jump on the anti-Hg bandwagon (as an org) then we are their last

saving grace. It's our job as parents to decide if they are jumping the

right way enough to justify our support.

Remember, soggy potato chips are not better than no potato chips.

Re: ASA to Participate in Press Conference/where does the

ASA stand?

Look it's evident by the variation of posts that some people have

had a good experience w/ the ASA and some people haven't. Some have

done great things locally and some haven't been able to get their

phone calls returned.

I agree with Bob that the ASA has got to present a unified postion

from the top down. Either your with us or your against us or your

just here to muck up the water. Either you believe their is a

connection between autism and hg containing vaccines or you don't.

Put your money where your mouth is. Use your grant money to

investigate the link in a manner that casts not doubts on the

validity of your research, do things right.Take an honest open-

minded look and use good science. Now is the time to step up ASA. It

will be interesting to see what they do.

When the first post came out today about ASA participating in the

Kirby/Olmsted press conference I wondered if it had to do with all

the attention Autism Speaks has been getting due to the

connection? Has the emergence of Autism Speaks basically forced ASA

to do something about this issue? Just rambling thoughts, but it

seems to me Autism Speaks is stelling ASA's thunder as the premiere

autism organization. You got to admit money and influence goes along

way....

We're all not going to agree on the ASA and that's ok because we

have all had different experiences with them.

We need to respect each other's opinions, whether we agree with them

or not.

We need to find out where ASA stands as a natinal organization and

not just some disjointed group here or there who supports our issues

and are working really hard to make a difference in their respective

states or communities. I'm not belittling those efforts, just saying

it is a national organization issue that remains to be seen.

Just poking my opinionated head in,

>

> I just had a very productive conversation with an ASA Board

member - he

> points out that ASA is featuring Martha Herbert (one of the most

> innovative and progressive researchers on toxins and neurological

> injury) as a keynote speaker at its July conference in Rhode

Island,

> and other speakers on biomedical interventions, etc. This

particular

> individual has worked very hard on legislation to ban thimerosal.

So

> there is no doubt that there are ASA initiatives and people that

are

> extremely helpful and many ASA members who are on board with the

views

> of many of us on this list.

>

> That still means we ask the tough questions and push ASA to

exercise

> leadership for their membership so that we can have a unified

position

> for our kids.

>

> So the jury is out and let's watch what ASA does.

>

>

>

[Guest guest]

I have a question. When I felt there

was a tremendous need for funding of research, I became very active and joined

NAAR as a Trustee and helped raise much money. I was a Trustee for six

years and at that time believed in what they were funding. Of course over

the last few years my philosophical differences with the staff and organization

became significant. Currently, I am no longer a Trustee and NAAR is now a

subsidiary of Autism Speaks.

But, at the end of the day as a

not-for-profit irrespective of anyone’s thought s they are entitled to fund

as they so as they see fit. Nobody was forced or coerced to contribute to

them. I have never understood why others or as many state the “bio-medical”

supporters don’t get aggressive and raise money via walks etc. for one of

the groups like NAA or TAAP, etc who will fund what many on this group want.

Of course I may be unaware of what many are already doing.

I don’t say this to be nasty or

argumentative but I am at a loss to understand. NAAR, CAN, ASA and/or AS

do not have a lock on anything. Individuals are free to contribute to whomever

they see fit. Why not start a National Bio-med Walk program to raise the needed

money for seed grants that can be leveraged into larger ones.

I used my anger and energy to do what I

felt was right at the time of NAAR. I have moved on and suspect others can

change course and accomplish this if it is what you believe in.

If possible, I would like to explore this without

debating the many poor moments in NAAR history which has nothing do with going

forward without them.

Don’t worry I have thick skin so NAAR

bashing if justified does not bother me. Any thoughts are appreciated

Marty

From: EOHarm [mailto:EOHarm ] On Behalf Of Holly Bortfeld

Sent: Tuesday, March 28, 2006 4:32

PM

EOHarm

Subject: RE: Re: ASA to

Participate in Press Conference/where does the ASA stand?

Well said . I wondered the same.

I see AutismSpeaks as the frontrunner for funding

but have a bad feeling

that they will do the same crap with it that NAAR

did so we'll end up

writing them off. CAN does their own thing,

whether we agree with what they

fund or not. That leaves ASA out in cold,

for money and people. AS doesn't

need them, CAN doesn't need them and the biomed

people don't need them.

They are out of the loop. They need a

loop. We are a big loop.

If they can jump on the anti-Hg bandwagon (as an

org) then we are their last

saving grace. It's our job as parents to

decide if they are jumping the

right way enough to justify our support.

Remember, soggy potato chips are not better than

no potato chips.

Re: ASA to Participate in Press

Conference/where does the

ASA stand?

Look it's evident by the variation of posts that

some people have

had a good experience w/ the ASA and some people

haven't. Some have

done great things locally and some haven't been

able to get their

phone calls returned.

I agree with Bob that the ASA has got to present a

unified postion

from the top down. Either your with us or your

against us or your

just here to muck up the water. Either you believe

their is a

connection between autism and hg containing

vaccines or you don't.

Put your money where your mouth is. Use your grant

money to

investigate the link in a manner that casts not

doubts on the

validity of your research, do things right.Take an

honest open-

minded look and use good science. Now is the time

to step up ASA. It

will be interesting to see what they do.

When the first post came out today about ASA

participating in the

Kirby/Olmsted press conference I wondered if it

had to do with all

the attention Autism Speaks has been getting due

to the

connection? Has the emergence of Autism Speaks

basically forced ASA

to do something about this issue? Just rambling

thoughts, but it

seems to me Autism Speaks is stelling ASA's

thunder as the premiere

autism organization. You got to admit money and

influence goes along

way....

We're all not going to agree on the ASA and that's

ok because we

have all had different experiences with them.

We need to respect each other's opinions, whether

we agree with them

or not.

We need to find out where ASA stands as a natinal

organization and

not just some disjointed group here or there who

supports our issues

and are working really hard to make a difference

in their respective

states or communities. I'm not belittling those

efforts, just saying

it is a national organization issue that remains

to be seen.

Just poking my opinionated head in,

>

> I just had a very productive conversation

with an ASA Board

member - he

> points out that ASA is featuring Martha

Herbert (one of the most

> innovative and progressive researchers on

toxins and neurological

> injury) as a keynote speaker at its July

conference in Rhode

Island,

> and other speakers on biomedical

interventions, etc. This

particular

> individual has worked very hard on

legislation to ban thimerosal.

So

> there is no doubt that there are ASA

initiatives and people that

are

> extremely helpful and many ASA members

who are on board with the

views

> of many of us on this list.

>

> That still means we ask the tough questions

and push ASA to

exercise

> leadership for their membership so that we

can have a unified

position

> for our kids.

>

> So the jury is out and let's watch what ASA

does.

>

>

>

[Guest guest]

ly, and this is how I see it, others

will disagree, no doubt, but I see it as they wasted that money. The pool

of money from which autism research comes is very small so to waste 5 years, 10

years, etc and countless millions of dollars on research that FAILED to produce

one single treatment was a waste of time, money, energy, efforts, and they were

bad stewards of our community. They used what political clout they had

for worthless endeavors, rather than on treatments. Think of where we

could all be if they’d have backed a different horse – in this case

biomedical treatments. And don’t think for a minute that ‘they

didn’t know’ cause I’ve seen the ARI newsletters dated BEFORE

I WAS BORN discussing the need for this research. The pool is small so if

you take from it and don’t produce, it’s just stealing.

Just me 2 cents.

From: EOHarm [mailto:EOHarm ] On Behalf Of Marty

Sent: Tuesday, March 28, 2006 6:18

PM

EOHarm

Subject: RE: Re: ASA to

Participate in Press Conference/where does the ASA stand?

I have a question. When I felt there

was a tremendous need for funding of research, I became very active and joined

NAAR as a Trustee and helped raise much money. I was a Trustee for six

years and at that time believed in what they were funding. Of course over

the last few years my philosophical differences with the staff and organization

became significant. Currently, I am no longer a Trustee and NAAR is now a

subsidiary of Autism Speaks.

But, at the end of the day as a not-for-profit

irrespective of anyone’s thought s they are entitled to fund as they so

as they see fit. Nobody was forced or coerced to contribute to

them. I have never understood why others or as many state the

“bio-medical” supporters don’t get aggressive and raise money

via walks etc. for one of the groups like NAA or TAAP, etc who will fund what

many on this group want. Of course I may be unaware of what many are

already doing.

I don’t say this to be nasty or

argumentative but I am at a loss to understand. NAAR, CAN, ASA and/or AS

do not have a lock on anything. Individuals are free to contribute to

whomever they see fit. Why not start a National Bio-med Walk program to

raise the needed money for seed grants that can be leveraged into larger ones.

I used my anger and energy to do what I

felt was right at the time of NAAR. I have moved on and suspect others

can change course and accomplish this if it is what you believe in.

If possible, I would like to explore this

without debating the many poor moments in NAAR history which has nothing do

with going forward without them.

Don’t worry I have thick skin so

NAAR bashing if justified does not bother me. Any thoughts are

appreciated

Marty

From: EOHarm [mailto:EOHarm ] On Behalf Of Holly Bortfeld

Sent: Tuesday, March 28, 2006 4:32

PM

EOHarm

Subject: RE: Re: ASA to

Participate in Press Conference/where does the ASA stand?

Well said . I

wondered the same.

I see AutismSpeaks as the frontrunner for funding

but have a bad feeling

that they will do the same crap with it that NAAR

did so we'll end up

writing them off. CAN does their own thing,

whether we agree with what they

fund or not. That leaves ASA out in cold,

for money and people. AS doesn't

need them, CAN doesn't need them and the biomed

people don't need them.

They are out of the loop. They need a

loop. We are a big loop.

If they can jump on the anti-Hg bandwagon (as an

org) then we are their last

saving grace. It's our job as parents to

decide if they are jumping the

right way enough to justify our support.

Remember, soggy potato chips are not better than

no potato chips.

Re: ASA to Participate in Press

Conference/where does the

ASA stand?

Look it's evident by the variation of posts that

some people have

had a good experience w/ the ASA and some people

haven't. Some have

done great things locally and some haven't been

able to get their

phone calls returned.

I agree with Bob that the ASA has got to present a

unified postion

from the top down. Either your with us or your

against us or your

just here to muck up the water. Either you believe

their is a

connection between autism and hg containing

vaccines or you don't.

Put your money where your mouth is. Use your grant

money to

investigate the link in a manner that casts not

doubts on the

validity of your research, do things right.Take an

honest open-

minded look and use good science. Now is the time

to step up ASA. It

will be interesting to see what they do.

When the first post came out today about ASA

participating in the

Kirby/Olmsted press conference I wondered if it

had to do with all

the attention Autism Speaks has been getting due

to the

connection? Has the emergence of Autism Speaks

basically forced ASA

to do something about this issue? Just rambling

thoughts, but it

seems to me Autism Speaks is stelling ASA's

thunder as the premiere

autism organization. You got to admit money and

influence goes along

way....

We're all not going to agree on the ASA and that's

ok because we

have all had different experiences with them.

We need to respect each other's opinions, whether

we agree with them

or not.

We need to find out where ASA stands as a natinal

organization and

not just some disjointed group here or there who

supports our issues

and are working really hard to make a difference

in their respective

states or communities. I'm not belittling those

efforts, just saying

it is a national organization issue that remains

to be seen.

Just poking my opinionated head in,

>

> I just had a very productive conversation

with an ASA Board

member - he

> points out that ASA is featuring Martha

Herbert (one of the most

> innovative and progressive researchers on

toxins and neurological

> injury) as a keynote speaker at its July

conference in Rhode

Island,

> and other speakers on biomedical

interventions, etc. This

particular

> individual has worked very hard on

legislation to ban thimerosal.

So

> there is no doubt that there are ASA

initiatives and people that

are

> extremely helpful and many ASA members

who are on board with the

views

> of many of us on this list.

>

> That still means we ask the tough questions

and push ASA to

exercise

> leadership for their membership so that we

can have a unified

position

> for our kids.

>

> So the jury is out and let's watch what ASA

does.

>

>

>

[Guest guest]

You are right. We are doing it - walks and events are being planned.

More should be done but it's hard to get started - most of the biomed

organizations have had to pick themselves up by their bootstraps,

especially because the established organizations from the early and

mid-90's dominated the field and biomedical intervention was and is

controversial. It is much easier to raise funds for, say, genetic

research when the research and medical establishment validates the

research. It is much more difficult to raise funds for say, vaccine

related research or alternative diets, or nutritional interventions,

when the entire public health establishment is sending a loud message

that they condemn devoting money to such research. So these are the

obstacles that have blocked the way of the parents interested in

biomedical research. It is really only in the last 1-2 years that a

critical mass of parents has emerged allowing sufficient organization

to do the work you are urging we do - and overcome the social obstacles

standing in our way.

That said fundraising is being done and more will come. It doesn't help

our effort to have an organization that has a nationwide celebrity

broadcast media engine dominate the fundraising, including

collaborations with toothpaste makers, comedians, former Federal

Reserve Board chairman, etc. On the other hand all the publicity

generated by those media engines does spill over. We need to

capitalize on it.

And research is not the only thing - organized focused political

advocacy that brings in as many parents as possible will help generate

research funding from the richest source - the Federal government.

So your point - that the established organizations do not have lock on

fundraising is well taken and we, as parents, should complain less and

do more - but it is not as if the playing field is close to being

level.

On Mar 28, 2006, at 6:18 PM, Marty wrote:

>

>

> I have a question.  When I felt there was a tremendous need for

> funding of research, I became very active and joined NAAR as a Trustee

> and helped raise much money.  I was a Trustee for six years and at

> that time believed in what they were funding.  Of course over the last

> few years my philosophical differences with the staff and organization

> became significant.  Currently, I am no longer a Trustee and NAAR is

> now a subsidiary of Autism Speaks.

>  

> But, at the end of the day as a not-for-profit irrespective of

> anyone’s thought s they are entitled to fund as they so as they see

> fit.  Nobody was forced or coerced to contribute to them.  I have

> never understood why others or as many state the “bio-medicalâ€

> supporters don’t get aggressive and raise money via walks etc. for one

> of the groups like NAA or TAAP, etc who will fund what many on this

> group want.  Of course I may be unaware of what many are already

> doing.

>  

> I don’t say this to be nasty or argumentative but I am at a loss to

> understand.  NAAR, CAN, ASA and/or AS do not have a lock on anything. 

> Individuals are free to contribute to whomever they see fit.  Why not

> start a National Bio-med Walk program to raise the needed money for

> seed grants that can be leveraged into larger ones.

>  

> I used my anger and energy to do what I felt was right at the time of

> NAAR.  I have moved on and suspect others can change course and

> accomplish this if it is what you believe in.

>  

> If possible, I would like to explore this without debating the many

> poor moments in NAAR history which has nothing do with going forward

> without them.

>  

> Don’t worry I have thick skin so NAAR bashing if justified does not

> bother me.  Any thoughts are appreciated

>  

> Marty

>  

>

> From: EOHarm [mailto:EOHarm ] On Behalf

> Of Holly Bortfeld

> Sent: Tuesday, March 28, 2006 4:32 PM

> EOHarm

> Subject: RE: Re: ASA to Participate in Press Conference/where

> does the ASA stand?

>  

> Well said .  I wondered the same. 

>

> I see AutismSpeaks as the frontrunner for funding but have a bad

> feeling

> that they will do the same crap with it that NAAR did so we'll end up

> writing them off.  CAN does their own thing, whether we agree with

> what they

> fund or not.  That leaves ASA out in cold, for money and people.  AS

> doesn't

> need them, CAN doesn't need them and the biomed people don't need them.

> They are out of the loop.  They need a loop.  We are a big loop. 

>

> If they can jump on the anti-Hg bandwagon (as an org) then we are

> their last

> saving grace.  It's our job as parents to decide if they are jumping

> the

> right way enough to justify our support. 

>

> Remember, soggy potato chips are not better than no potato chips.

>

>

> Re: ASA to Participate in Press Conference/where

> does the

> ASA stand?

>

>

> Look it's evident by the variation of posts that some people have

> had a good experience w/ the ASA and some people haven't. Some have

> done great things locally and some haven't been able to get their

> phone calls returned.

>

> I agree with Bob that the ASA has got to present a unified postion

> from the top down. Either your with us or your against us or your

> just here to muck up the water. Either you believe their is a

> connection between autism and hg containing vaccines or you don't.

> Put your money where your mouth is. Use your grant money to

> investigate the link in a manner that casts not doubts on the

> validity of your research, do things right.Take an honest open-

> minded look and use good science. Now is the time to step up ASA. It

> will be interesting to see what they do.

>

> When the first post came out today about ASA participating in the

> Kirby/Olmsted press conference I wondered if it had to do with all

> the attention Autism Speaks has been getting due to the

> connection? Has the emergence of Autism Speaks basically forced ASA

> to do something about this issue? Just rambling thoughts, but it

> seems to me Autism Speaks is stelling ASA's thunder as the premiere

> autism organization. You got to admit money and influence goes along

> way....

>

> We're all not going to agree on the ASA and that's ok because we

> have all had different experiences with them.

>

> We need to respect each other's opinions, whether we agree with them

> or not.

>

> We need to find out where ASA stands as a natinal organization and

> not just some disjointed group here or there who supports our issues

> and are working really hard to make a difference in their respective

> states or communities. I'm not belittling those efforts, just saying

> it is a national organization issue that remains to be seen.

>

> Just poking my opinionated head in,

>

>

>

>

>

>

>

>

>

>

> >

> > I just had a very productive conversation with an ASA Board

> member - he

> > points out that ASA is featuring Martha Herbert (one of the most

> > innovative and progressive researchers on toxins and neurological

> > injury) as a keynote speaker at its July conference in Rhode

> Island,

> > and other speakers on biomedical interventions, etc. This

> particular

> > individual has worked very hard on legislation to ban thimerosal.

> So

> > there is no doubt that there are ASA initiatives and people that

> are

> > extremely helpful  and many ASA members who are on board with the

> views

> > of many of us on this list.

> >

> > That still means we ask the tough questions and push ASA to

> exercise

> > leadership for their membership so that we can have a unified

> position

> > for our kids.

> >

> > So the jury is out and let's watch what ASA does.

> >

> >

> >

>

>

>

>

>

>

>

>

[Guest guest]

But doesn't the right horse need to be backed now? Time is wasting away, I

agree. The past is the past whether we like it or not. If we collectively

don't do it (raise money) who will? It would be great if we could pick one

organization and that may be the problem deciding, and help raise money for

what we know will be funded.

OK I can be in my own dreamworld but I believe this group can accomplish

miracles. I just use ACHAMP as an example, they/we have crossed many

bridges and have gotten the masses of different people with varying opinions

together to accomplish much good.

Marty

Re: ASA to Participate in Press Conference/where does the

ASA stand?

Look it's evident by the variation of posts that some people have

had a good experience w/ the ASA and some people haven't. Some have

done great things locally and some haven't been able to get their

phone calls returned.

I agree with Bob that the ASA has got to present a unified postion

from the top down. Either your with us or your against us or your

just here to muck up the water. Either you believe their is a

connection between autism and hg containing vaccines or you don't.

Put your money where your mouth is. Use your grant money to

investigate the link in a manner that casts not doubts on the

validity of your research, do things right.Take an honest open-

minded look and use good science. Now is the time to step up ASA. It

will be interesting to see what they do.

When the first post came out today about ASA participating in the

Kirby/Olmsted press conference I wondered if it had to do with all

the attention Autism Speaks has been getting due to the

connection? Has the emergence of Autism Speaks basically forced ASA

to do something about this issue? Just rambling thoughts, but it

seems to me Autism Speaks is stelling ASA's thunder as the premiere

autism organization. You got to admit money and influence goes along

way....

We're all not going to agree on the ASA and that's ok because we

have all had different experiences with them.

We need to respect each other's opinions, whether we agree with them

or not.

We need to find out where ASA stands as a natinal organization and

not just some disjointed group here or there who supports our issues

and are working really hard to make a difference in their respective

states or communities. I'm not belittling those efforts, just saying

it is a national organization issue that remains to be seen.

Just poking my opinionated head in,

>

> I just had a very productive conversation with an ASA Board

member - he

> points out that ASA is featuring Martha Herbert (one of the most

> innovative and progressive researchers on toxins and neurological

> injury) as a keynote speaker at its July conference in Rhode

Island,

> and other speakers on biomedical interventions, etc. This

particular

> individual has worked very hard on legislation to ban thimerosal.

So

> there is no doubt that there are ASA initiatives and people that

are

> extremely helpful and many ASA members who are on board with the

views

> of many of us on this list.

>

> That still means we ask the tough questions and push ASA to

exercise

> leadership for their membership so that we can have a unified

position

> for our kids.

>

> So the jury is out and let's watch what ASA does.

>

>

>

[Guest guest]

Thanks for bringing that up, Marty. NAA's first walk will take place in Boston on April 30th. Details coming very soon! If anyone else in interested in organizing a walk for NAA, please contact me at wendy@....

Thanks!

From: EOHarm [mailto:EOHarm ] On Behalf Of MartySent: Tuesday, March 28, 2006 6:18 PMEOHarm Subject: RE: Re: ASA to Participate in Press Conference/where does the ASA stand?

I have a question. When I felt there was a tremendous need for funding of research, I became very active and joined NAAR as a Trustee and helped raise much money. I was a Trustee for six years and at that time believed in what they were funding. Of course over the last few years my philosophical differences with the staff and organization became significant. Currently, I am no longer a Trustee and NAAR is now a subsidiary of Autism Speaks.

But, at the end of the day as a not-for-profit irrespective of anyone’s thought s they are entitled to fund as they so as they see fit. Nobody was forced or coerced to contribute to them. I have never understood why others or as many state the “bio-medical” supporters don’t get aggressive and raise money via walks etc. for one of the groups like NAA or TAAP, etc who will fund what many on this group want. Of course I may be unaware of what many are already doing.

I don’t say this to be nasty or argumentative but I am at a loss to understand. NAAR, CAN, ASA and/or AS do not have a lock on anything. Individuals are free to contribute to whomever they see fit. Why not start a National Bio-med Walk program to raise the needed money for seed grants that can be leveraged into larger ones.

I used my anger and energy to do what I felt was right at the time of NAAR. I have moved on and suspect others can change course and accomplish this if it is what you believe in.

If possible, I would like to explore this without debating the many poor moments in NAAR history which has nothing do with going forward without them.

Don’t worry I have thick skin so NAAR bashing if justified does not bother me. Any thoughts are appreciated

Marty

From: EOHarm [mailto:EOHarm ] On Behalf Of Holly BortfeldSent: Tuesday, March 28, 2006 4:32 PMEOHarm Subject: RE: Re: ASA to Participate in Press Conference/where does the ASA stand?

Well said . I wondered the same. I see AutismSpeaks as the frontrunner for funding but have a bad feelingthat they will do the same crap with it that NAAR did so we'll end upwriting them off. CAN does their own thing, whether we agree with what theyfund or not. That leaves ASA out in cold, for money and people. AS doesn'tneed them, CAN doesn't need them and the biomed people don't need them.They are out of the loop. They need a loop. We are a big loop. If they can jump on the anti-Hg bandwagon (as an org) then we are their lastsaving grace. It's our job as parents to decide if they are jumping theright way enough to justify our support. Remember, soggy potato chips are not better than no potato chips.-----Original Message-----From: EOHarm [mailto:EOHarm ] On Behalf Ofandrea52521991Sent: Tuesday, March 28, 2006 4:17 PMEOHarm Subject: Re: ASA to Participate in Press Conference/where does theASA stand?Look it's evident by the variation of posts that some people have had a good experience w/ the ASA and some people haven't. Some have done great things locally and some haven't been able to get their phone calls returned.I agree with Bob that the ASA has got to present a unified postion from the top down. Either your with us or your against us or your just here to muck up the water. Either you believe their is a connection between autism and hg containing vaccines or you don't. Put your money where your mouth is. Use your grant money to investigate the link in a manner that casts not doubts on the validity of your research, do things right.Take an honest open-minded look and use good science. Now is the time to step up ASA. It will be interesting to see what they do.When the first post came out today about ASA participating in the Kirby/Olmsted press conference I wondered if it had to do with all the attention Autism Speaks has been getting due to the connection? Has the emergence of Autism Speaks basically forced ASA to do something about this issue? Just rambling thoughts, but it seems to me Autism Speaks is stelling ASA's thunder as the premiere autism organization. You got to admit money and influence goes along way....We're all not going to agree on the ASA and that's ok because we have all had different experiences with them. We need to respect each other's opinions, whether we agree with them or not. We need to find out where ASA stands as a natinal organization and not just some disjointed group here or there who supports our issues and are working really hard to make a difference in their respective states or communities. I'm not belittling those efforts, just saying it is a national organization issue that remains to be seen.Just poking my opinionated head in,>> I just had a very productive conversation with an ASA Board member - he > points out that ASA is featuring Martha Herbert (one of the most > innovative and progressive researchers on toxins and neurological > injury) as a keynote speaker at its July conference in Rhode Island, > and other speakers on biomedical interventions, etc. This particular > individual has worked very hard on legislation to ban thimerosal. So > there is no doubt that there are ASA initiatives and people that are > extremely helpful and many ASA members who are on board with the views > of many of us on this list.> > That still means we ask the tough questions and push ASA to exercise > leadership for their membership so that we can have a unified position > for our kids.> > So the jury is out and let's watch what ASA does.> > >

[Guest guest]

on 3/28/06 6:55 PM, Fournier at @... wrote:

Thanks for bringing that up, Marty. NAA's first walk will take place in Boston on April 30th. Details coming very soon! If anyone else in interested in organizing a walk for NAA, please contact me at wendy@....

Thanks!

Hey - that's great to hear. I'm sure we'll have one on Long Island in no time.

-

[Guest guest]

Absolutely, (assuming you do not mean NAAR or AS) and we've been backing it

all along with our time and efforts spent marching on DC, calling, faxing

and meeting with senators, going to and organizing conferences to learn and

to spread the word to those who matter, the parents.

I know you are new to this list but many research projects have come around

for funding. Some are still open to accept funding if you'd like to use

your proven talents to help raise money for research that will produce

something you can actually use to help your kid. Safeminds, NAA and others

have put out press releases on all the lists for such funding needs. If you

are serious, I am sure we can find you something to work on.

Btw, ARI does have a national walk program that just started. Here is the

link http://www.autismwebsite.com/ari/media/sponsorwalk.htm

Holly

Re: ASA to Participate in Press Conference/where does the

ASA stand?

Look it's evident by the variation of posts that some people have

had a good experience w/ the ASA and some people haven't. Some have

done great things locally and some haven't been able to get their

phone calls returned.

I agree with Bob that the ASA has got to present a unified postion

from the top down. Either your with us or your against us or your

just here to muck up the water. Either you believe their is a

connection between autism and hg containing vaccines or you don't.

Put your money where your mouth is. Use your grant money to

investigate the link in a manner that casts not doubts on the

validity of your research, do things right.Take an honest open-

minded look and use good science. Now is the time to step up ASA. It

will be interesting to see what they do.

When the first post came out today about ASA participating in the

Kirby/Olmsted press conference I wondered if it had to do with all

the attention Autism Speaks has been getting due to the

connection? Has the emergence of Autism Speaks basically forced ASA

to do something about this issue? Just rambling thoughts, but it

seems to me Autism Speaks is stelling ASA's thunder as the premiere

autism organization. You got to admit money and influence goes along

way....

We're all not going to agree on the ASA and that's ok because we

have all had different experiences with them.

We need to respect each other's opinions, whether we agree with them

or not.

We need to find out where ASA stands as a natinal organization and

not just some disjointed group here or there who supports our issues

and are working really hard to make a difference in their respective

states or communities. I'm not belittling those efforts, just saying

it is a national organization issue that remains to be seen.

Just poking my opinionated head in,

>

> I just had a very productive conversation with an ASA Board

member - he

> points out that ASA is featuring Martha Herbert (one of the most

> innovative and progressive researchers on toxins and neurological

> injury) as a keynote speaker at its July conference in Rhode

Island,

> and other speakers on biomedical interventions, etc. This

particular

> individual has worked very hard on legislation to ban thimerosal.

So

> there is no doubt that there are ASA initiatives and people that

are

> extremely helpful and many ASA members who are on board with the

views

> of many of us on this list.

>

> That still means we ask the tough questions and push ASA to

exercise

> leadership for their membership so that we can have a unified

position

> for our kids.

>

> So the jury is out and let's watch what ASA does.

>

>

>

[Guest guest]

Holly- Not only do I share your name but your opinion too!! This has

been too long ignored and if we as parents now don't make it our duty

to stand up and yell at the rallys and in drs offices and ASA's around

the country our kids kids will be the ones to suffer. Money is out

there, we just need it put to work for our kids and our kids kids.

Holly A

[Guest guest]

I absolutely mean NO to NAAR and CAN but believe

it is premature to make judgment on AS. Notwithstanding AS’s

acquisition of NAAR, AS driven by a different culture and management. Personally,

I favor funding for bio-medical, autoimmunity and genetic research. Yes I

said genetic but do not advocate that as the be all and end all. As

Autism Speaks sets its course on funding and if a wide assortment including good

projects in the aforementioned areas are funded, that would make a difference

and give choices to all of us to either support an existing organization or go separate

ways.

My motives have been challenged by some on

this list but I feel I have nothing to prove. All I care about is advancing

the field of autism research and as Bob correctly pointed out, advance

legislative goals and treatment options. I think this year will be

interesting to see what occurs with AS as well as other organizations.

Right now I am quite busy working on

opening a middle and high school for individuals with autism spectrum disorders

in NYC. But, if I see a good opportunity to get involved with a good

project, I will jump on board.

Marty

From: EOHarm [mailto:EOHarm ] On Behalf Of Holly Bortfeld

Sent: Tuesday, March 28, 2006 7:24

PM

EOHarm

Subject: RE: Re: ASA to

Participate in Press Conference/where does the ASA stand?

Absolutely, (assuming you do

not mean NAAR or AS) and we've been backing it

all along with our time and efforts spent marching

on DC, calling, faxing

and meeting with senators, going to and organizing

conferences to learn and

to spread the word to those who matter, the

parents.

I know you are new to this list but many research

projects have come around

for funding. Some are still open to accept

funding if you'd like to use

your proven talents to help raise money for

research that will produce

something you can actually use to help your

kid. Safeminds, NAA and others

have put out press releases on all the lists for

such funding needs. If you

are serious, I am sure we can find you something

to work on.

Btw, ARI does have a national walk program that

just started. Here is the

link http://www.autismwebsite.com/ari/media/sponsorwalk.htm

Holly

Re: ASA to Participate in Press

Conference/where does the

ASA stand?

Look it's evident by the variation of posts that

some people have

had a good experience w/ the ASA and some people

haven't. Some have

done great things locally and some haven't been

able to get their

phone calls returned.

I agree with Bob that the ASA has got to present a

unified postion

from the top down. Either your with us or your

against us or your

just here to muck up the water. Either you believe

their is a

connection between autism and hg containing

vaccines or you don't.

Put your money where your mouth is. Use your grant

money to

investigate the link in a manner that casts not

doubts on the

validity of your research, do things right.Take an

honest open-

minded look and use good science. Now is the time

to step up ASA. It

will be interesting to see what they do.

When the first post came out today about ASA

participating in the

Kirby/Olmsted press conference I wondered if it

had to do with all

the attention Autism Speaks has been getting due

to the

connection? Has the emergence of Autism Speaks

basically forced ASA

to do something about this issue? Just rambling

thoughts, but it

seems to me Autism Speaks is stelling ASA's

thunder as the premiere

autism organization. You got to admit money and

influence goes along

way....

We're all not going to agree on the ASA and that's

ok because we

have all had different experiences with them.

We need to respect each other's opinions, whether

we agree with them

or not.

We need to find out where ASA stands as a natinal

organization and

not just some disjointed group here or there who

supports our issues

and are working really hard to make a difference

in their respective

states or communities. I'm not belittling those

efforts, just saying

it is a national organization issue that remains

to be seen.

Just poking my opinionated head in,

>

> I just had a very productive conversation

with an ASA Board

member - he

> points out that ASA is featuring Martha

Herbert (one of the most

> innovative and progressive researchers on

toxins and neurological

> injury) as a keynote speaker at its July conference

in Rhode

Island,

> and other speakers on biomedical

interventions, etc. This

particular

> individual has worked very hard on

legislation to ban thimerosal.

So

> there is no doubt that there are ASA

initiatives and people that

are

> extremely helpful and many ASA members

who are on board with the

views

> of many of us on this list.

>

> That still means we ask the tough questions

and push ASA to

exercise

> leadership for their membership so that we

can have a unified

position

> for our kids.

>

> So the jury is out and let's watch what ASA

does.

>

>

>

[Guest guest]

I don't know much about NAAR, so can't bash them, lol. I also don't

know that much about AS. What I have seen that I think might feed a

little of the hostility is that they're reinventing the wheel. My

local ASA people feel they are doing largely what ASA does, so in

their minds, why not join with ASA and make it better. Then they make

statements like we need to get info out. SAR has been doing that for

years, why don't they back SAR and make it better (not that it could

ever be any better, right lenny ;-). They say research needs to be

done. They can take their pick of CAN doing genetic stuff, DAN & NAA

doing biomedical, FEAT doing behavior, etc. They could join them and

make it better. Of course, one could argue that's what they did with

NAAR, but as I said, I don't know that much about them.

We just need to start teaming up instead of making a new group every

time we want something done.

Debi, who tried to start her own group, lol