Re: PA rally.... I can't shut up anymore

June 23, 2007

Autism Speaks continues to make friends

all around. <Insert sarcastic tone>

Pamela

" Courage is doing

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

Eddie Rickenbacker,

top US

fighter ace, WWI

From:

EOHarm [mailto:EOHarm ] On Behalf Of autismlink

Sent: Saturday, June 23, 2007

10:15 AM

EOHarm

Subject: PA rally.... I

can't shut up anymore

I don't think I've ever hated another group as much as

I hate Autism

Speaks.

For four years a handful of advocates in PA were responsible for

finding, writing, pushing forth, finding sponsors, and advocating for

insurance legislation so insurance companies are forced to stop

discriminating against kids with autism.

In comes Autism Speaks. They woo Speaker of the House Dennis O'Brien

(who has always been our champion -- he is a passionate man about

autism because his nephew is very severely affected). Last year, we

got the bill passed unanimously through the House, but a few members

of the Senate (mostly in the pockets of insurance companies) stopped

the bill and quashed it at the 11th hour. We were crushed.

So this year, we reintroduce the bill. Dennis O'Brien leaves out

every advocate who had helped him up to the point -- Autism Speaks

comes in with their hollywood actor from the " Sopranos " (holy irony

there, eh?), and introduce the " new " bill that " they " put

forth amid

much fanfare, pomp and circumstance.

Well, now the push has to come for the bill because it's back in the

Senate again being quashed by the same idiots who have insurance

companies in their pocket.

The president of the ASA in burg,

PA makes a reservation for the

Rotunda to have a rally. Who comes in? You guessed it. Autism

Speaks. I'm here trying to rally people to get on a bus, to come to

burg, to

support the bill, etc. etc. I'm making posters and

flyers and phonecalls, etc. I was assured that Autism Speaks was

merely there to pay for the busses and what not.

Next thing I know, on their website, they're touting " THEIR " bill in

Pennsylvania!!!!!!!!

I am so ready to explode, I think my veins are

standing out on end in my neck.

I only had 7 people interested in coming, 3 of whom backed out when

they heard autism speaks had something to do with it. I was going to

go to the rally anyway because I had these lovely AUTISM SPEAKS DOES

NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

PENNSYLVANIA,

AUTISMLINK SPEAKS " ........ but I am not going. In fact,

nobody that I know in the Pittsburgh

area is getting on the bus. (I

had nothing to do with that.)

They're having trouble recruiting participants.

Hrm. Do you think it has to do with their GUERRILLA SCORCHED EARTH

TACTICS? Let's just burn everything else down so we're the only one

left standing, either that or buy them off, and then we're the only

game in town. (CAN jumped at their money like a shark at a bucket of

chum.)

Although I've fought for this for many years, I don't think I'm going

to go. (I'm not 100% sure yet because I'm so torn.)

I'm going to concentrate on helping the kids that we help at the local

level. The only thing that makes me happy about the autism community

-- watching a kid make progress. Having him come to say " pretzel " to

miss cindy after not being able to verbalize all of his life.

I cannot take this political crap anymore. I'm so weary, frustrated,

and beaten down. But you know that will last about 3 days and then

I'll be back after them with a vengeance.

June 23, 2007

I'm speechless. Way to go A.S.

>

> Autism Speaks continues to make friends all around. <Insert sarcastic tone>

>

> Pamela

>

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

> you're scared. "

>

> Eddie Rickenbacker, top US fighter ace, WWI

>

> _____

>

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

> autismlink

> Sent: Saturday, June 23, 2007 10:15 AM

> EOHarm

> Subject: PA rally.... I can't shut up anymore

>

> I don't think I've ever hated another group as much as I hate Autism

> Speaks.

>

> For four years a handful of advocates in PA were responsible for

> finding, writing, pushing forth, finding sponsors, and advocating for

> insurance legislation so insurance companies are forced to stop

> discriminating against kids with autism.

>

> In comes Autism Speaks. They woo Speaker of the House Dennis O'Brien

> (who has always been our champion -- he is a passionate man about

> autism because his nephew is very severely affected). Last year, we

> got the bill passed unanimously through the House, but a few members

> of the Senate (mostly in the pockets of insurance companies) stopped

> the bill and quashed it at the 11th hour. We were crushed.

>

> So this year, we reintroduce the bill. Dennis O'Brien leaves out

> every advocate who had helped him up to the point -- Autism Speaks

> comes in with their hollywood actor from the " Sopranos " (holy irony

> there, eh?), and introduce the " new " bill that " they " put forth amid

> much fanfare, pomp and circumstance.

>

> Well, now the push has to come for the bill because it's back in the

> Senate again being quashed by the same idiots who have insurance

> companies in their pocket.

>

> The president of the ASA in burg, PA makes a reservation for the

> Rotunda to have a rally. Who comes in? You guessed it. Autism

> Speaks. I'm here trying to rally people to get on a bus, to come to

> burg, to support the bill, etc. etc. I'm making posters and

> flyers and phonecalls, etc. I was assured that Autism Speaks was

> merely there to pay for the busses and what not.

>

> Next thing I know, on their website, they're touting " THEIR " bill in

> Pennsylvania!!!!!!!! I am so ready to explode, I think my veins are

> standing out on end in my neck.

>

> I only had 7 people interested in coming, 3 of whom backed out when

> they heard autism speaks had something to do with it. I was going to

> go to the rally anyway because I had these lovely AUTISM SPEAKS DOES

> NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

> PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not going. In fact,

> nobody that I know in the Pittsburgh area is getting on the bus. (I

> had nothing to do with that.)

>

> They're having trouble recruiting participants.

>

> Hrm. Do you think it has to do with their GUERRILLA SCORCHED EARTH

> TACTICS? Let's just burn everything else down so we're the only one

> left standing, either that or buy them off, and then we're the only

> game in town. (CAN jumped at their money like a shark at a bucket of

> chum.)

>

> Although I've fought for this for many years, I don't think I'm going

> to go. (I'm not 100% sure yet because I'm so torn.)

>

> I'm going to concentrate on helping the kids that we help at the local

> level. The only thing that makes me happy about the autism community

> -- watching a kid make progress. Having him come to say " pretzel " to

> miss cindy after not being able to verbalize all of his life.

>

> I cannot take this political crap anymore. I'm so weary, frustrated,

> and beaten down. But you know that will last about 3 days and then

> I'll be back after them with a vengeance.

>

June 23, 2007

There is possible better news on the horizon. I think with Steve

Edelson and Doreen Greenspesh (?) and Dave Humphrey now on the board

of National ASA, we may see an effective political alternative to

Austism Speaks' mischief. Time will tell.

Lenny

> >

> > Autism Speaks continues to make friends all around. <Insert

sarcastic tone>

> >

> > Pamela

> >

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

courage unless

> > you're scared. "

> >

> > Eddie Rickenbacker, top US fighter ace, WWI

> >

> > _____

> >

> > From: EOHarm [mailto:EOHarm ] On

Behalf Of

> > autismlink

> > Sent: Saturday, June 23, 2007 10:15 AM

> > EOHarm

> > Subject: PA rally.... I can't shut up anymore

> >

> > I don't think I've ever hated another group as much as I hate Autism

> > Speaks.

> >

> > For four years a handful of advocates in PA were responsible for

> > finding, writing, pushing forth, finding sponsors, and advocating for

> > insurance legislation so insurance companies are forced to stop

> > discriminating against kids with autism.

> >

> > In comes Autism Speaks. They woo Speaker of the House Dennis O'Brien

> > (who has always been our champion -- he is a passionate man about

> > autism because his nephew is very severely affected). Last year, we

> > got the bill passed unanimously through the House, but a few members

> > of the Senate (mostly in the pockets of insurance companies) stopped

> > the bill and quashed it at the 11th hour. We were crushed.

> >

> > So this year, we reintroduce the bill. Dennis O'Brien leaves out

> > every advocate who had helped him up to the point -- Autism Speaks

> > comes in with their hollywood actor from the " Sopranos " (holy irony

> > there, eh?), and introduce the " new " bill that " they " put forth amid

> > much fanfare, pomp and circumstance.

> >

> > Well, now the push has to come for the bill because it's back in the

> > Senate again being quashed by the same idiots who have insurance

> > companies in their pocket.

> >

> > The president of the ASA in burg, PA makes a reservation for the

> > Rotunda to have a rally. Who comes in? You guessed it. Autism

> > Speaks. I'm here trying to rally people to get on a bus, to come to

> > burg, to support the bill, etc. etc. I'm making posters and

> > flyers and phonecalls, etc. I was assured that Autism Speaks was

> > merely there to pay for the busses and what not.

> >

> > Next thing I know, on their website, they're touting " THEIR " bill in

> > Pennsylvania!!!!!!!! I am so ready to explode, I think my veins are

> > standing out on end in my neck.

> >

> > I only had 7 people interested in coming, 3 of whom backed out when

> > they heard autism speaks had something to do with it. I was going to

> > go to the rally anyway because I had these lovely AUTISM SPEAKS DOES

> > NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

> > PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not going. In fact,

> > nobody that I know in the Pittsburgh area is getting on the bus. (I

> > had nothing to do with that.)

> >

> > They're having trouble recruiting participants.

> >

> > Hrm. Do you think it has to do with their GUERRILLA SCORCHED EARTH

> > TACTICS? Let's just burn everything else down so we're the only one

> > left standing, either that or buy them off, and then we're the only

> > game in town. (CAN jumped at their money like a shark at a bucket of

> > chum.)

> >

> > Although I've fought for this for many years, I don't think I'm going

> > to go. (I'm not 100% sure yet because I'm so torn.)

> >

> > I'm going to concentrate on helping the kids that we help at the local

> > level. The only thing that makes me happy about the autism community

> > -- watching a kid make progress. Having him come to say " pretzel " to

> > miss cindy after not being able to verbalize all of his life.

> >

> > I cannot take this political crap anymore. I'm so weary, frustrated,

> > and beaten down. But you know that will last about 3 days and then

> > I'll be back after them with a vengeance.

> >

>

June 23, 2007

, I understand, I've worked in my neck of the woods some. Just

remember, getting it done is the purpose, not as much as to who gets

it done. I personally would welcome AS in my area if they could get

stuff done.

Debi

>

> I don't think I've ever hated another group as much as I hate Autism

> Speaks.

>

> For four years a handful of advocates in PA were responsible for

> finding, writing, pushing forth, finding sponsors, and advocating for

> insurance legislation so insurance companies are forced to stop

> discriminating against kids with autism.

>

> In comes Autism Speaks. They woo Speaker of the House Dennis O'Brien

> (who has always been our champion -- he is a passionate man about

> autism because his nephew is very severely affected). Last year, we

> got the bill passed unanimously through the House, but a few members

> of the Senate (mostly in the pockets of insurance companies) stopped

> the bill and quashed it at the 11th hour. We were crushed.

>

> So this year, we reintroduce the bill. Dennis O'Brien leaves out

> every advocate who had helped him up to the point -- Autism Speaks

> comes in with their hollywood actor from the " Sopranos " (holy irony

> there, eh?), and introduce the " new " bill that " they " put forth amid

> much fanfare, pomp and circumstance.

>

> Well, now the push has to come for the bill because it's back in the

> Senate again being quashed by the same idiots who have insurance

> companies in their pocket.

>

> The president of the ASA in burg, PA makes a reservation for the

> Rotunda to have a rally. Who comes in? You guessed it. Autism

> Speaks. I'm here trying to rally people to get on a bus, to come to

> burg, to support the bill, etc. etc. I'm making posters and

> flyers and phonecalls, etc. I was assured that Autism Speaks was

> merely there to pay for the busses and what not.

>

> Next thing I know, on their website, they're touting " THEIR " bill in

> Pennsylvania!!!!!!!! I am so ready to explode, I think my veins are

> standing out on end in my neck.

>

> I only had 7 people interested in coming, 3 of whom backed out when

> they heard autism speaks had something to do with it. I was going to

> go to the rally anyway because I had these lovely AUTISM SPEAKS DOES

> NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

> PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not going. In fact,

> nobody that I know in the Pittsburgh area is getting on the bus. (I

> had nothing to do with that.)

>

> They're having trouble recruiting participants.

>

> Hrm. Do you think it has to do with their GUERRILLA SCORCHED EARTH

> TACTICS? Let's just burn everything else down so we're the only one

> left standing, either that or buy them off, and then we're the only

> game in town. (CAN jumped at their money like a shark at a bucket of

> chum.)

>

> Although I've fought for this for many years, I don't think I'm going

> to go. (I'm not 100% sure yet because I'm so torn.)

>

> I'm going to concentrate on helping the kids that we help at the local

> level. The only thing that makes me happy about the autism community

> -- watching a kid make progress. Having him come to say " pretzel " to

> miss cindy after not being able to verbalize all of his life.

>

> I cannot take this political crap anymore. I'm so weary, frustrated,

> and beaten down. But you know that will last about 3 days and then

> I'll be back after them with a vengeance.

>

June 24, 2007

One of the problems facing any Board of the ASA is that it is a

loose confederation of almost completely independent chapters. The

National can say, " Do this. " and it is completely up to the chapters

to do what they want.

We have ten chapters of the ASA in New York and they don't have any

statewide organization of any kind. When my son was first diagnosed

in 2001 there were 13 chapters of ASA in NY. Since then three

chapters of America's largest autism organization closed in the

middle of a raging autism epidemic. When I went to my local chapter

functions and said I thought my child was vaccine injured I was

pretty much told to shut up and go away.

Last week I was kicked off the Autism Society of Wisconsin's

group becuase I posted the text of the Material Safety Data

Sheet for Thimerosal, and Boyd Haley's CV when he was accused of

being a " professional witness "

I wish the new board members of the ASA luck, They will need it.

> > >

> > > Autism Speaks continues to make friends all around. <Insert

> sarcastic tone>

> > >

> > > Pamela

> > >

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

> courage unless

> > > you're scared. "

> > >

> > > Eddie Rickenbacker, top US fighter ace, WWI

> > >

> > > _____

> > >

> > > From: EOHarm [mailto:EOHarm ] On

> Behalf Of

> > > autismlink

> > > Sent: Saturday, June 23, 2007 10:15 AM

> > > EOHarm

> > > Subject: PA rally.... I can't shut up anymore

> > >

> > > I don't think I've ever hated another group as much as I hate

Autism

> > > Speaks.

> > >

> > > For four years a handful of advocates in PA were responsible

for

> > > finding, writing, pushing forth, finding sponsors, and

advocating for

> > > insurance legislation so insurance companies are forced to stop

> > > discriminating against kids with autism.

> > >

> > > In comes Autism Speaks. They woo Speaker of the House Dennis

O'Brien

> > > (who has always been our champion -- he is a passionate man

about

> > > autism because his nephew is very severely affected). Last

year, we

> > > got the bill passed unanimously through the House, but a few

members

> > > of the Senate (mostly in the pockets of insurance companies)

stopped

> > > the bill and quashed it at the 11th hour. We were crushed.

> > >

> > > So this year, we reintroduce the bill. Dennis O'Brien leaves

out

> > > every advocate who had helped him up to the point -- Autism

Speaks

> > > comes in with their hollywood actor from the " Sopranos " (holy

irony

> > > there, eh?), and introduce the " new " bill that " they " put

forth amid

> > > much fanfare, pomp and circumstance.

> > >

> > > Well, now the push has to come for the bill because it's back

in the

> > > Senate again being quashed by the same idiots who have

insurance

> > > companies in their pocket.

> > >

> > > The president of the ASA in burg, PA makes a reservation

for the

> > > Rotunda to have a rally. Who comes in? You guessed it. Autism

> > > Speaks. I'm here trying to rally people to get on a bus, to

come to

> > > burg, to support the bill, etc. etc. I'm making posters

and

> > > flyers and phonecalls, etc. I was assured that Autism Speaks

was

> > > merely there to pay for the busses and what not.

> > >

> > > Next thing I know, on their website, they're touting " THEIR "

bill in

> > > Pennsylvania!!!!!!!! I am so ready to explode, I think my

veins are

> > > standing out on end in my neck.

> > >

> > > I only had 7 people interested in coming, 3 of whom backed out

when

> > > they heard autism speaks had something to do with it. I was

going to

> > > go to the rally anyway because I had these lovely AUTISM

SPEAKS DOES

> > > NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

> > > PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not going.

In fact,

> > > nobody that I know in the Pittsburgh area is getting on the

bus. (I

> > > had nothing to do with that.)

> > >

> > > They're having trouble recruiting participants.

> > >

> > > Hrm. Do you think it has to do with their GUERRILLA SCORCHED

EARTH

> > > TACTICS? Let's just burn everything else down so we're the

only one

> > > left standing, either that or buy them off, and then we're the

only

> > > game in town. (CAN jumped at their money like a shark at a

bucket of

> > > chum.)

> > >

> > > Although I've fought for this for many years, I don't think

I'm going

> > > to go. (I'm not 100% sure yet because I'm so torn.)

> > >

> > > I'm going to concentrate on helping the kids that we help at

the local

> > > level. The only thing that makes me happy about the autism

community

> > > -- watching a kid make progress. Having him come to

say " pretzel " to

> > > miss cindy after not being able to verbalize all of his life.

> > >

> > > I cannot take this political crap anymore. I'm so weary,

frustrated,

> > > and beaten down. But you know that will last about 3 days and

then

> > > I'll be back after them with a vengeance.

> > >

> >

>

June 24, 2007

I certainly respect the abilities of these 3 individuals in their

fields but do any of the 3 have a child who is affected, dx with

autism, ASD, or vaccine injury?

On Jun 23, 2007, at 5:31 PM, schaferatsprynet wrote:

>

> There is possible better news on the horizon. I think with Steve

> Edelson and Doreen Greenspesh (?) and Dave Humphrey now on the board

> of National ASA, we may see an effective political alternative to

> Austism Speaks' mischief. Time will tell.

>

> Lenny

>

> > >

> > > Autism Speaks continues to make friends all around. <Insert

> sarcastic tone>

> > >

> > > Pamela

> > >

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

> courage unless

> > > you're scared. "

> > >

> > > Eddie Rickenbacker, top US fighter ace, WWI

> > >

> > > _____

> > >

> > > From: EOHarm [mailto:EOHarm ] On

> Behalf Of

> > > autismlink

> > > Sent: Saturday, June 23, 2007 10:15 AM

> > > EOHarm

> > > Subject: PA rally.... I can't shut up anymore

> > >

> > > I don't think I've ever hated another group as much as I hate

> Autism

> > > Speaks.

> > >

> > > For four years a handful of advocates in PA were responsible for

> > > finding, writing, pushing forth, finding sponsors, and advocating

> for

> > > insurance legislation so insurance companies are forced to stop

> > > discriminating against kids with autism.

> > >

> > > In comes Autism Speaks. They woo Speaker of the House Dennis

> O'Brien

> > > (who has always been our champion -- he is a passionate man about

> > > autism because his nephew is very severely affected). Last year,

> we

> > > got the bill passed unanimously through the House, but a few

> members

> > > of the Senate (mostly in the pockets of insurance companies)

> stopped

> > > the bill and quashed it at the 11th hour. We were crushed.

> > >

> > > So this year, we reintroduce the bill. Dennis O'Brien leaves out

> > > every advocate who had helped him up to the point -- Autism Speaks

> > > comes in with their hollywood actor from the " Sopranos " (holy

> irony

> > > there, eh?), and introduce the " new " bill that " they " put forth

> amid

> > > much fanfare, pomp and circumstance.

> > >

> > > Well, now the push has to come for the bill because it's back in

> the

> > > Senate again being quashed by the same idiots who have insurance

> > > companies in their pocket.

> > >

> > > The president of the ASA in burg, PA makes a reservation

> for the

> > > Rotunda to have a rally. Who comes in? You guessed it. Autism

> > > Speaks. I'm here trying to rally people to get on a bus, to come

> to

> > > burg, to support the bill, etc. etc. I'm making posters and

> > > flyers and phonecalls, etc. I was assured that Autism Speaks was

> > > merely there to pay for the busses and what not.

> > >

> > > Next thing I know, on their website, they're touting " THEIR " bill

> in

> > > Pennsylvania!!!!!!!! I am so ready to explode, I think my veins

> are

> > > standing out on end in my neck.

> > >

> > > I only had 7 people interested in coming, 3 of whom backed out

> when

> > > they heard autism speaks had something to do with it. I was going

> to

> > > go to the rally anyway because I had these lovely AUTISM SPEAKS

> DOES

> > > NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

> > > PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not going. In

> fact,

> > > nobody that I know in the Pittsburgh area is getting on the bus.

> (I

> > > had nothing to do with that.)

> > >

> > > They're having trouble recruiting participants.

> > >

> > > Hrm. Do you think it has to do with their GUERRILLA SCORCHED EARTH

> > > TACTICS? Let's just burn everything else down so we're the only

> one

> > > left standing, either that or buy them off, and then we're the

> only

> > > game in town. (CAN jumped at their money like a shark at a bucket

> of

> > > chum.)

> > >

> > > Although I've fought for this for many years, I don't think I'm

> going

> > > to go. (I'm not 100% sure yet because I'm so torn.)

> > >

> > > I'm going to concentrate on helping the kids that we help at the

> local

> > > level. The only thing that makes me happy about the autism

> community

> > > -- watching a kid make progress. Having him come to say " pretzel "

> to

> > > miss cindy after not being able to verbalize all of his life.

> > >

> > > I cannot take this political crap anymore. I'm so weary,

> frustrated,

> > > and beaten down. But you know that will last about 3 days and then

> > > I'll be back after them with a vengeance.

> > >

> >

>

Law Office of J. Krakow

2001 Marcus Avenue, Suite N125

Lake Success, NY 11042

516-354-3300

646-349-1771 (fax)

(917) 763-0063 (Mobile)

June 24, 2007

That group was started when T. Shattuck was the president

of the Autism Society of America of Wisconsin. Shattuck, you may

recall, is the author of the study that tries to prove there is no

autism epidemic. So, I would not be so surprized to hear they gave you

the old heave ho for challenging the pro-pharma groupspeak.

I think the individual autonomy of the local ASA chapters may it their

saving grace, in the long run, however. It is probably why the Autism

Borg Speaks has not targeted the ASA for assimilation.

BTW, I didn't mean to leave out groups like A-CHAMP, Autism United and

others as providing an alternative voice to Autism Speaks.

Lenny

> > > >

> > > > Autism Speaks continues to make friends all around. <Insert

> > sarcastic tone>

> > > >

> > > > Pamela

> > > >

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

> > courage unless

> > > > you're scared. "

> > > >

> > > > Eddie Rickenbacker, top US fighter ace, WWI

> > > >

> > > > _____

> > > >

> > > > From: EOHarm [mailto:EOHarm ] On

> > Behalf Of

> > > > autismlink

> > > > Sent: Saturday, June 23, 2007 10:15 AM

> > > > EOHarm

> > > > Subject: PA rally.... I can't shut up anymore

> > > >

> > > > I don't think I've ever hated another group as much as I hate

> Autism

> > > > Speaks.

> > > >

> > > > For four years a handful of advocates in PA were responsible

> for

> > > > finding, writing, pushing forth, finding sponsors, and

> advocating for

> > > > insurance legislation so insurance companies are forced to stop

> > > > discriminating against kids with autism.

> > > >

> > > > In comes Autism Speaks. They woo Speaker of the House Dennis

> O'Brien

> > > > (who has always been our champion -- he is a passionate man

> about

> > > > autism because his nephew is very severely affected). Last

> year, we

> > > > got the bill passed unanimously through the House, but a few

> members

> > > > of the Senate (mostly in the pockets of insurance companies)

> stopped

> > > > the bill and quashed it at the 11th hour. We were crushed.

> > > >

> > > > So this year, we reintroduce the bill. Dennis O'Brien leaves

> out

> > > > every advocate who had helped him up to the point -- Autism

> Speaks

> > > > comes in with their hollywood actor from the " Sopranos " (holy

> irony

> > > > there, eh?), and introduce the " new " bill that " they " put

> forth amid

> > > > much fanfare, pomp and circumstance.

> > > >

> > > > Well, now the push has to come for the bill because it's back

> in the

> > > > Senate again being quashed by the same idiots who have

> insurance

> > > > companies in their pocket.

> > > >

> > > > The president of the ASA in burg, PA makes a reservation

> for the

> > > > Rotunda to have a rally. Who comes in? You guessed it. Autism

> > > > Speaks. I'm here trying to rally people to get on a bus, to

> come to

> > > > burg, to support the bill, etc. etc. I'm making posters

> and

> > > > flyers and phonecalls, etc. I was assured that Autism Speaks

> was

> > > > merely there to pay for the busses and what not.

> > > >

> > > > Next thing I know, on their website, they're touting " THEIR "

> bill in

> > > > Pennsylvania!!!!!!!! I am so ready to explode, I think my

> veins are

> > > > standing out on end in my neck.

> > > >

> > > > I only had 7 people interested in coming, 3 of whom backed out

> when

> > > > they heard autism speaks had something to do with it. I was

> going to

> > > > go to the rally anyway because I had these lovely AUTISM

> SPEAKS DOES

> > > > NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

> > > > PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not going.

> In fact,

> > > > nobody that I know in the Pittsburgh area is getting on the

> bus. (I

> > > > had nothing to do with that.)

> > > >

> > > > They're having trouble recruiting participants.

> > > >

> > > > Hrm. Do you think it has to do with their GUERRILLA SCORCHED

> EARTH

> > > > TACTICS? Let's just burn everything else down so we're the

> only one

> > > > left standing, either that or buy them off, and then we're the

> only

> > > > game in town. (CAN jumped at their money like a shark at a

> bucket of

> > > > chum.)

> > > >

> > > > Although I've fought for this for many years, I don't think

> I'm going

> > > > to go. (I'm not 100% sure yet because I'm so torn.)

> > > >

> > > > I'm going to concentrate on helping the kids that we help at

> the local

> > > > level. The only thing that makes me happy about the autism

> community

> > > > -- watching a kid make progress. Having him come to

> say " pretzel " to

> > > > miss cindy after not being able to verbalize all of his life.

> > > >

> > > > I cannot take this political crap anymore. I'm so weary,

> frustrated,

> > > > and beaten down. But you know that will last about 3 days and

> then

> > > > I'll be back after them with a vengeance.

> > > >

> > >

> >

>

June 24, 2007

Bob,

Having a child with autism doesn't necessarily count for much when it

comes to political leadership. Just look a the pharma/vaccine

sycophants who run Autism Speaks -- plenty of family autism there.

Those ASA national board members where at least elected by parents

with autism. Whereas Autism Speaks leadership is sponsored, not elected.

Also, it is the people without family autism, who are on our side, who

are more likely to have the time to do the work necessary to make the

changes we need happen.

Lenny

>

June 24, 2007

Just asking a question.

On Jun 23, 2007, at 8:13 PM, schaferatsprynet wrote:

Bob,

Having a child with autism doesn't necessarily count for much when it

comes to political leadership. Just look a the pharma/vaccine

sycophants who run Autism Speaks -- plenty of family autism there.

Those ASA national board members where at least elected by parents

with autism. Whereas Autism Speaks leadership is sponsored, not

elected.

Also, it is the people without family autism, who are on our side, who

are more likely to have the time to do the work necessary to make the

changes we need happen.

Lenny

>

June 24, 2007

Just answering it. . . ;-)

Lenny

>

> Bob,

> Having a child with autism doesn't necessarily count for much when it

> comes to political leadership. Just look a the pharma/vaccine

> sycophants who run Autism Speaks -- plenty of family autism there.

> Those ASA national board members where at least elected by parents

> with autism. Whereas Autism Speaks leadership is sponsored, not

> elected.

>

-snip-

June 24, 2007

,

I think this is happening in many chapters across the country. Quite

a shame, as they have the opportunity to impact a lot of lives in a

an amazing way. I hope the chapters can find a common voice.

As said about AS, many of them need new blood. Some of the old

timers need to step aside and let some fresh perspective and energy

into the ranks.

Just MHO.

> > > >

> > > > Autism Speaks continues to make friends all around. <Insert

> > sarcastic tone>

> > > >

> > > > Pamela

> > > >

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

> > courage unless

> > > > you're scared. "

> > > >

> > > > Eddie Rickenbacker, top US fighter ace, WWI

> > > >

> > > > _____

> > > >

> > > > From: EOHarm [mailto:EOHarm ]

On

> > Behalf Of

> > > > autismlink

> > > > Sent: Saturday, June 23, 2007 10:15 AM

> > > > EOHarm

> > > > Subject: PA rally.... I can't shut up anymore

> > > >

> > > > I don't think I've ever hated another group as much as I hate

> Autism

> > > > Speaks.

> > > >

> > > > For four years a handful of advocates in PA were responsible

> for

> > > > finding, writing, pushing forth, finding sponsors, and

> advocating for

> > > > insurance legislation so insurance companies are forced to

stop

> > > > discriminating against kids with autism.

> > > >

> > > > In comes Autism Speaks. They woo Speaker of the House Dennis

> O'Brien

> > > > (who has always been our champion -- he is a passionate man

> about

> > > > autism because his nephew is very severely affected). Last

> year, we

> > > > got the bill passed unanimously through the House, but a few

> members

> > > > of the Senate (mostly in the pockets of insurance companies)

> stopped

> > > > the bill and quashed it at the 11th hour. We were crushed.

> > > >

> > > > So this year, we reintroduce the bill. Dennis O'Brien leaves

> out

> > > > every advocate who had helped him up to the point -- Autism

> Speaks

> > > > comes in with their hollywood actor from the " Sopranos " (holy

> irony

> > > > there, eh?), and introduce the " new " bill that " they " put

> forth amid

> > > > much fanfare, pomp and circumstance.

> > > >

> > > > Well, now the push has to come for the bill because it's back

> in the

> > > > Senate again being quashed by the same idiots who have

> insurance

> > > > companies in their pocket.

> > > >

> > > > The president of the ASA in burg, PA makes a

reservation

> for the

> > > > Rotunda to have a rally. Who comes in? You guessed it. Autism

> > > > Speaks. I'm here trying to rally people to get on a bus, to

> come to

> > > > burg, to support the bill, etc. etc. I'm making posters

> and

> > > > flyers and phonecalls, etc. I was assured that Autism Speaks

> was

> > > > merely there to pay for the busses and what not.

> > > >

> > > > Next thing I know, on their website, they're touting " THEIR "

> bill in

> > > > Pennsylvania!!!!!!!! I am so ready to explode, I think my

> veins are

> > > > standing out on end in my neck.

> > > >

> > > > I only had 7 people interested in coming, 3 of whom backed

out

> when

> > > > they heard autism speaks had something to do with it. I was

> going to

> > > > go to the rally anyway because I had these lovely AUTISM

> SPEAKS DOES

> > > > NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

> > > > PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not going.

> In fact,

> > > > nobody that I know in the Pittsburgh area is getting on the

> bus. (I

> > > > had nothing to do with that.)

> > > >

> > > > They're having trouble recruiting participants.

> > > >

> > > > Hrm. Do you think it has to do with their GUERRILLA SCORCHED

> EARTH

> > > > TACTICS? Let's just burn everything else down so we're the

> only one

> > > > left standing, either that or buy them off, and then we're

the

> only

> > > > game in town. (CAN jumped at their money like a shark at a

> bucket of

> > > > chum.)

> > > >

> > > > Although I've fought for this for many years, I don't think

> I'm going

> > > > to go. (I'm not 100% sure yet because I'm so torn.)

> > > >

> > > > I'm going to concentrate on helping the kids that we help at

> the local

> > > > level. The only thing that makes me happy about the autism

> community

> > > > -- watching a kid make progress. Having him come to

> say " pretzel " to

> > > > miss cindy after not being able to verbalize all of his life.

> > > >

> > > > I cannot take this political crap anymore. I'm so weary,

> frustrated,

> > > > and beaten down. But you know that will last about 3 days and

> then

> > > > I'll be back after them with a vengeance.

> > > >

> > >

> >

>

June 24, 2007

Please don't forget my anti-vaccine (I wonder if I am allowed to say that) husband who represents the Southwest portion of the US (he is also the national treasurer). I don't know if it matters what the spouse does as far as they are concerned but I am about as in-your-face as you can get about being anti-vaccine, anti-pharmaceutical, fight with the school district, appeal to legislators as you can get. The higher-ups know me as such, I delivered an anti-genetics-research petition (from our anti-vaccine/genetics community) to ban a certain genetics autism agency from speaking at the national conference and they still re-elected my spouse. Our Phoenix ASA leader who is a biomedical researcher as well hopefully has never been told that he cannot pursue the medical issues which ARE autism.Roxschaferatsprynet <schafer@...> wrote: That group was started when T. Shattuck was the president of the Autism Society of America of Wisconsin. Shattuck, you may recall, is the author of the study that tries to prove there is no autism epidemic. So, I would not be so surprized to hear they gave you the old heave ho for challenging the pro-pharma groupspeak. I think the individual autonomy of the local ASA chapters may it their saving grace, in the long run, however. It is probably why the Autism Borg Speaks has not targeted the ASA for assimilation. BTW, I didn't mean to leave out groups like A-CHAMP, Autism

United and others as providing an alternative voice to Autism Speaks. Lenny > > > > > > > > Autism Speaks continues to make friends all around. <Insert > > sarcastic tone> > > > > > > > > > > > > > > > > Pamela > > > > > > > > "Courage is doing what you're afraid to do. There can be no > > courage unless > > > > you're scared." > > > > > > > > Eddie Rickenbacker, top US fighter ace, WWI > > > > > > > > > > > > >

> > > _____ > > > > > > > > From: EOHarm [mailto:EOHarm ] On > > Behalf Of > > > > autismlink > > > > Sent: Saturday, June 23, 2007 10:15 AM > > > > EOHarm > > > > Subject: PA rally.... I can't shut up anymore > > > > > > > > > > > > > > > > I don't think I've ever hated another group as much as I hate > Autism > > > > Speaks. > > > > > > > > For four years a handful of advocates in PA were responsible > for > > > > finding, writing, pushing forth, finding sponsors, and > advocating for

> > > > insurance legislation so insurance companies are forced to stop > > > > discriminating against kids with autism. > > > > > > > > In comes Autism Speaks. They woo Speaker of the House Dennis > O'Brien > > > > (who has always been our champion -- he is a passionate man > about > > > > autism because his nephew is very severely affected). Last > year, we > > > > got the bill passed unanimously through the House, but a few > members > > > > of the Senate (mostly in the pockets of insurance companies) > stopped > > > > the bill and quashed it at the 11th hour. We were crushed. > > > > > > > > So this year, we reintroduce the bill. Dennis O'Brien leaves > out > > > > every advocate who had helped him up to the point -- Autism >

Speaks > > > > comes in with their hollywood actor from the "Sopranos" (holy > irony > > > > there, eh?), and introduce the "new" bill that "they" put > forth amid > > > > much fanfare, pomp and circumstance. > > > > > > > > Well, now the push has to come for the bill because it's back > in the > > > > Senate again being quashed by the same idiots who have > insurance > > > > companies in their pocket. > > > > > > > > The president of the ASA in burg, PA makes a reservation > for the > > > > Rotunda to have a rally. Who comes in? You guessed it. Autism > > > > Speaks. I'm here trying to rally people to get on a bus, to > come to > > > > burg, to support the bill, etc. etc. I'm making posters > and > > >

> flyers and phonecalls, etc. I was assured that Autism Speaks > was > > > > merely there to pay for the busses and what not. > > > > > > > > Next thing I know, on their website, they're touting "THEIR" > bill in > > > > Pennsylvania!!!!!!!! I am so ready to explode, I think my > veins are > > > > standing out on end in my neck. > > > > > > > > I only had 7 people interested in coming, 3 of whom backed out > when > > > > they heard autism speaks had something to do with it. I was > going to > > > > go to the rally anyway because I had these lovely AUTISM > SPEAKS DOES > > > > NOT SPEAK FOR ME tshirts made... and a 6' banner that says "IN > > > > PENNSYLVANIA, AUTISMLINK SPEAKS"........ but I am not going. > In fact, > >

> > nobody that I know in the Pittsburgh area is getting on the > bus. (I > > > > had nothing to do with that.) > > > > > > > > They're having trouble recruiting participants. > > > > > > > > Hrm. Do you think it has to do with their GUERRILLA SCORCHED > EARTH > > > > TACTICS? Let's just burn everything else down so we're the > only one > > > > left standing, either that or buy them off, and then we're the > only > > > > game in town. (CAN jumped at their money like a shark at a > bucket of > > > > chum.) > > > > > > > > Although I've fought for this for many years, I don't think > I'm going > > > > to go. (I'm not 100% sure yet because I'm so torn.) > > > > > > > > I'm going to concentrate on

helping the kids that we help at > the local > > > > level. The only thing that makes me happy about the autism > community > > > > -- watching a kid make progress. Having him come to > say "pretzel" to > > > > miss cindy after not being able to verbalize all of his life. > > > > > > > > I cannot take this political crap anymore. I'm so weary, > frustrated, > > > > and beaten down. But you know that will last about 3 days and > then > > > > I'll be back after them with a vengeance. > > > > > > > > > > > > > > > > > >

Need a vacation? Get great deals to amazing places on Travel.

June 24, 2007

I went to an ASA leadership retreat back in Feb. During evening

chatter I noticed we always found ourselves discussing biomedical

stuff & what's working. Biomedical is very well-known by many ASA

members. It's been my experience locally that those with older

children poo-poo biomed, mostly because Zimmerman used to see

them all. According to him (what I understood from his lectures here)

gfcf is nothing, chelation is untested & unproven, but SSRIs are a

great therapy. (Note my daughter takes SSRI, just laughing at his

rationale.) HBOT is a waste of money & doesn't do anything, etc. But

he loves talking about his study of brain inflammation. Too bad he

doesn't comprehend what Boyd Haley understands. No wonder this poor

parents of older kids are so scared to try anything.

Debi

> > > > >

> > > > > Autism Speaks continues to make friends all around. <Insert

> > > sarcastic tone>

> > > > >

> > > > > Pamela

> > > > >

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

> > > courage unless

> > > > > you're scared. "

> > > > >

> > > > > Eddie Rickenbacker, top US fighter ace, WWI

> > > > >

> > > > > _____

> > > > >

> > > > > From: EOHarm [mailto:EOHarm ]

> On

> > > Behalf Of

> > > > > autismlink

> > > > > Sent: Saturday, June 23, 2007 10:15 AM

> > > > > EOHarm

> > > > > Subject: PA rally.... I can't shut up anymore

> > > > >

> > > > > I don't think I've ever hated another group as much as I hate

> > Autism

> > > > > Speaks.

> > > > >

> > > > > For four years a handful of advocates in PA were responsible

> > for

> > > > > finding, writing, pushing forth, finding sponsors, and

> > advocating for

> > > > > insurance legislation so insurance companies are forced to

> stop

> > > > > discriminating against kids with autism.

> > > > >

> > > > > In comes Autism Speaks. They woo Speaker of the House Dennis

> > O'Brien

> > > > > (who has always been our champion -- he is a passionate man

> > about

> > > > > autism because his nephew is very severely affected). Last

> > year, we

> > > > > got the bill passed unanimously through the House, but a few

> > members

> > > > > of the Senate (mostly in the pockets of insurance companies)

> > stopped

> > > > > the bill and quashed it at the 11th hour. We were crushed.

> > > > >

> > > > > So this year, we reintroduce the bill. Dennis O'Brien leaves

> > out

> > > > > every advocate who had helped him up to the point -- Autism

> > Speaks

> > > > > comes in with their hollywood actor from the " Sopranos " (holy

> > irony

> > > > > there, eh?), and introduce the " new " bill that " they " put

> > forth amid

> > > > > much fanfare, pomp and circumstance.

> > > > >

> > > > > Well, now the push has to come for the bill because it's back

> > in the

> > > > > Senate again being quashed by the same idiots who have

> > insurance

> > > > > companies in their pocket.

> > > > >

> > > > > The president of the ASA in burg, PA makes a

> reservation

> > for the

> > > > > Rotunda to have a rally. Who comes in? You guessed it. Autism

> > > > > Speaks. I'm here trying to rally people to get on a bus, to

> > come to

> > > > > burg, to support the bill, etc. etc. I'm making posters

> > and

> > > > > flyers and phonecalls, etc. I was assured that Autism Speaks

> > was

> > > > > merely there to pay for the busses and what not.

> > > > >

> > > > > Next thing I know, on their website, they're touting " THEIR "

> > bill in

> > > > > Pennsylvania!!!!!!!! I am so ready to explode, I think my

> > veins are

> > > > > standing out on end in my neck.

> > > > >

> > > > > I only had 7 people interested in coming, 3 of whom backed

> out

> > when

> > > > > they heard autism speaks had something to do with it. I was

> > going to

> > > > > go to the rally anyway because I had these lovely AUTISM

> > SPEAKS DOES

> > > > > NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

> > > > > PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not going.

> > In fact,

> > > > > nobody that I know in the Pittsburgh area is getting on the

> > bus. (I

> > > > > had nothing to do with that.)

> > > > >

> > > > > They're having trouble recruiting participants.

> > > > >

> > > > > Hrm. Do you think it has to do with their GUERRILLA SCORCHED

> > EARTH

> > > > > TACTICS? Let's just burn everything else down so we're the

> > only one

> > > > > left standing, either that or buy them off, and then we're

> the

> > only

> > > > > game in town. (CAN jumped at their money like a shark at a

> > bucket of

> > > > > chum.)

> > > > >

> > > > > Although I've fought for this for many years, I don't think

> > I'm going

> > > > > to go. (I'm not 100% sure yet because I'm so torn.)

> > > > >

> > > > > I'm going to concentrate on helping the kids that we help at

> > the local

> > > > > level. The only thing that makes me happy about the autism

> > community

> > > > > -- watching a kid make progress. Having him come to

> > say " pretzel " to

> > > > > miss cindy after not being able to verbalize all of his life.

> > > > >

> > > > > I cannot take this political crap anymore. I'm so weary,

> > frustrated,

> > > > > and beaten down. But you know that will last about 3 days and

> > then

> > > > > I'll be back after them with a vengeance.

> > > > >

> > > >

> > >

> >

>

June 24, 2007

you don't have to have a child who is affected to be effective in this arena.

From: " J. Krakow" <rkrakow@...>Reply- EOHarm EOHarm Subject: Re: Re: PA rally.... I can't shut up anymoreDate: Sat, 23 Jun 2007 19:50:25 -0400>I certainly respect the abilities of these 3 individuals in their >fields but do any of the 3 have a child who is affected, dx with >autism, ASD, or vaccine injury?>>On Jun 23, 2007, at 5:31 PM, schaferatsprynet wrote:>>>>> There is possible better news on the horizon. I think with Steve

June 24, 2007

If no new volunteers step up to replace the old volunteers, the

chapter will close.

Carolyn

> > > > >

> > > > > Autism Speaks continues to make friends all around. <Insert

> > > sarcastic tone>

> > > > >

> > > > > Pamela

> > > > >

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

> > > courage unless

> > > > > you're scared. "

> > > > >

> > > > > Eddie Rickenbacker, top US fighter ace, WWI

> > > > >

> > > > > _____

> > > > >

> > > > > From: EOHarm

[mailto:EOHarm ]

> On

> > > Behalf Of

> > > > > autismlink

> > > > > Sent: Saturday, June 23, 2007 10:15 AM

> > > > > EOHarm

> > > > > Subject: PA rally.... I can't shut up anymore

> > > > >

> > > > > I don't think I've ever hated another group as much as I

hate

> > Autism

> > > > > Speaks.

> > > > >

> > > > > For four years a handful of advocates in PA were

responsible

> > for

> > > > > finding, writing, pushing forth, finding sponsors, and

> > advocating for

> > > > > insurance legislation so insurance companies are forced to

> stop

> > > > > discriminating against kids with autism.

> > > > >

> > > > > In comes Autism Speaks. They woo Speaker of the House

Dennis

> > O'Brien

> > > > > (who has always been our champion -- he is a passionate man

> > about

> > > > > autism because his nephew is very severely affected). Last

> > year, we

> > > > > got the bill passed unanimously through the House, but a

few

> > members

> > > > > of the Senate (mostly in the pockets of insurance

companies)

> > stopped

> > > > > the bill and quashed it at the 11th hour. We were crushed.

> > > > >

> > > > > So this year, we reintroduce the bill. Dennis O'Brien

leaves

> > out

> > > > > every advocate who had helped him up to the point -- Autism

> > Speaks

> > > > > comes in with their hollywood actor from the " Sopranos "

(holy

> > irony

> > > > > there, eh?), and introduce the " new " bill that " they " put

> > forth amid

> > > > > much fanfare, pomp and circumstance.

> > > > >

> > > > > Well, now the push has to come for the bill because it's

back

> > in the

> > > > > Senate again being quashed by the same idiots who have

> > insurance

> > > > > companies in their pocket.

> > > > >

> > > > > The president of the ASA in burg, PA makes a

> reservation

> > for the

> > > > > Rotunda to have a rally. Who comes in? You guessed it.

Autism

> > > > > Speaks. I'm here trying to rally people to get on a bus, to

> > come to

> > > > > burg, to support the bill, etc. etc. I'm making

posters

> > and

> > > > > flyers and phonecalls, etc. I was assured that Autism

Speaks

> > was

> > > > > merely there to pay for the busses and what not.

> > > > >

> > > > > Next thing I know, on their website, they're

touting " THEIR "

> > bill in

> > > > > Pennsylvania!!!!!!!! I am so ready to explode, I think my

> > veins are

> > > > > standing out on end in my neck.

> > > > >

> > > > > I only had 7 people interested in coming, 3 of whom backed

> out

> > when

> > > > > they heard autism speaks had something to do with it. I was

> > going to

> > > > > go to the rally anyway because I had these lovely AUTISM

> > SPEAKS DOES

> > > > > NOT SPEAK FOR ME tshirts made... and a 6' banner that

says " IN

> > > > > PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not

going.

> > In fact,

> > > > > nobody that I know in the Pittsburgh area is getting on the

> > bus. (I

> > > > > had nothing to do with that.)

> > > > >

> > > > > They're having trouble recruiting participants.

> > > > >

> > > > > Hrm. Do you think it has to do with their GUERRILLA

SCORCHED

> > EARTH

> > > > > TACTICS? Let's just burn everything else down so we're the

> > only one

> > > > > left standing, either that or buy them off, and then we're

> the

> > only

> > > > > game in town. (CAN jumped at their money like a shark at a

> > bucket of

> > > > > chum.)

> > > > >

> > > > > Although I've fought for this for many years, I don't think

> > I'm going

> > > > > to go. (I'm not 100% sure yet because I'm so torn.)

> > > > >

> > > > > I'm going to concentrate on helping the kids that we help

at

> > the local

> > > > > level. The only thing that makes me happy about the autism

> > community

> > > > > -- watching a kid make progress. Having him come to

> > say " pretzel " to

> > > > > miss cindy after not being able to verbalize all of his

life.

> > > > >

> > > > > I cannot take this political crap anymore. I'm so weary,

> > frustrated,

> > > > > and beaten down. But you know that will last about 3 days

and

> > then

> > > > > I'll be back after them with a vengeance.

> > > > >

> > > >

> > >

> >

>

June 24, 2007

Thanks for pointing that out to me. I did not, however, suggest

otherwise in my message. I have gotten two responses to my question,

neither of which have answered my question, which is a straightforward

one. I simply wanted to know whether or not any of the 3 are parents of

an affected child. My question contains no opinion as to whether any

of these people are or will be effective, or whether or not parents of

affected children will be more or less effective than individuals who

do not have an affected child.

Do you know the answer to my question?

On Jun 23, 2007, at 10:11 PM, elevatordance wrote:

you don't have to have a child who is affected to be effective in this

arena.Â

Â

> From:Â Â " J. Krakow " <rkrakow@...>

> Reply-To:Â Â EOHarm

> To:Â Â EOHarm

> Subject:Â Â Re: Re: PA rally.... I can't shut up anymore

> Date:Â Â Sat, 23 Jun 2007 19:50:25 -0400

> >I certainly respect the abilities of these 3 individuals in their

> >fields but do any of the 3 have a child who is affected, dx with

> >autism, ASD, or vaccine injury?

> >

> >On Jun 23, 2007, at 5:31 PM, schaferatsprynet wrote:

> >

> >>

> >>Â Â There is possible better news on the horizon. I think with

> Steve

June 24, 2007

ASA is changing. The description of a loosely former network of chapters that

pretty much

operate of their own is correct.

The national ASA is made up of a Board of Directors democratically elected by

ASA

membership except for 2 appointments (I am one of the appointments). This group

acts

much more decisively and raises its own money. It does represent the 120,000

families

that are members of the local and national chapters.

In the recent ASA national and regional election Steve Edelson of ARI and Doreen

Granpeesheh both won against strong ASA chapter leaders.

Bernie Rimland founded ASA. They last formal action of his life was to negotiate

with ASA

and ARI a far reaching agreement in a Memo of Understanding.

I discussed this at length with Bernie and Steve Edelson - for those of you that

knew

Bernie - his vision was incredible - and he didn't compromise.

He saw a new future for ASA that would unite the parent community around

TREATMENT

NOW and meaningful research that improved the lives of families.

He saw ARI continuing its bold advocacy and sponsoring promising emerging

treatments.

As a board member of ARI and well I am committed to both of Bernie's goals.

The national ASA accepted the MOU with Bernie 13-0.

13-0

It was not a strategic decision.

It was the right thing to do. Decided by good people.

The recent MOU with Easter Seals will be announced July 12th and will continue

to define

the future. The announcement will bring a new wave of changes we all have been

advocating.

The ASA options policy is to respect all parents opinion and treatments as long

as it does

not create obvious harm.

ASA is an easy target since each chapter can make a mess out of unity and

openness.

ASA will emerge into how Bernie sees it - provided we do this together.

If ASA does not work - it will take a long time to create something else in its

place.

Humphrey

> > > > > >

> > > > > > Autism Speaks continues to make friends all around. <Insert

> > > > sarcastic tone>

> > > > > >

> > > > > > Pamela

> > > > > >

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

> > > > courage unless

> > > > > > you're scared. "

> > > > > >

> > > > > > Eddie Rickenbacker, top US fighter ace, WWI

> > > > > >

> > > > > > _____

> > > > > >

> > > > > > From: EOHarm

> [mailto:EOHarm ]

> > On

> > > > Behalf Of

> > > > > > autismlink

> > > > > > Sent: Saturday, June 23, 2007 10:15 AM

> > > > > > EOHarm

> > > > > > Subject: PA rally.... I can't shut up anymore

> > > > > >

> > > > > > I don't think I've ever hated another group as much as I

> hate

> > > Autism

> > > > > > Speaks.

> > > > > >

> > > > > > For four years a handful of advocates in PA were

> responsible

> > > for

> > > > > > finding, writing, pushing forth, finding sponsors, and

> > > advocating for

> > > > > > insurance legislation so insurance companies are forced to

> > stop

> > > > > > discriminating against kids with autism.

> > > > > >

> > > > > > In comes Autism Speaks. They woo Speaker of the House

> Dennis

> > > O'Brien

> > > > > > (who has always been our champion -- he is a passionate man

> > > about

> > > > > > autism because his nephew is very severely affected). Last

> > > year, we

> > > > > > got the bill passed unanimously through the House, but a

> few

> > > members

> > > > > > of the Senate (mostly in the pockets of insurance

> companies)

> > > stopped

> > > > > > the bill and quashed it at the 11th hour. We were crushed.

> > > > > >

> > > > > > So this year, we reintroduce the bill. Dennis O'Brien

> leaves

> > > out

> > > > > > every advocate who had helped him up to the point -- Autism

> > > Speaks

> > > > > > comes in with their hollywood actor from the " Sopranos "

> (holy

> > > irony

> > > > > > there, eh?), and introduce the " new " bill that " they " put

> > > forth amid

> > > > > > much fanfare, pomp and circumstance.

> > > > > >

> > > > > > Well, now the push has to come for the bill because it's

> back

> > > in the

> > > > > > Senate again being quashed by the same idiots who have

> > > insurance

> > > > > > companies in their pocket.

> > > > > >

> > > > > > The president of the ASA in burg, PA makes a

> > reservation

> > > for the

> > > > > > Rotunda to have a rally. Who comes in? You guessed it.

> Autism

> > > > > > Speaks. I'm here trying to rally people to get on a bus, to

> > > come to

> > > > > > burg, to support the bill, etc. etc. I'm making

> posters

> > > and

> > > > > > flyers and phonecalls, etc. I was assured that Autism

> Speaks

> > > was

> > > > > > merely there to pay for the busses and what not.

> > > > > >

> > > > > > Next thing I know, on their website, they're

> touting " THEIR "

> > > bill in

> > > > > > Pennsylvania!!!!!!!! I am so ready to explode, I think my

> > > veins are

> > > > > > standing out on end in my neck.

> > > > > >

> > > > > > I only had 7 people interested in coming, 3 of whom backed

> > out

> > > when

> > > > > > they heard autism speaks had something to do with it. I was

> > > going to

> > > > > > go to the rally anyway because I had these lovely AUTISM

> > > SPEAKS DOES

> > > > > > NOT SPEAK FOR ME tshirts made... and a 6' banner that

> says " IN

> > > > > > PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not

> going.

> > > In fact,

> > > > > > nobody that I know in the Pittsburgh area is getting on the

> > > bus. (I

> > > > > > had nothing to do with that.)

> > > > > >

> > > > > > They're having trouble recruiting participants.

> > > > > >

> > > > > > Hrm. Do you think it has to do with their GUERRILLA

> SCORCHED

> > > EARTH

> > > > > > TACTICS? Let's just burn everything else down so we're the

> > > only one

> > > > > > left standing, either that or buy them off, and then we're

> > the

> > > only

> > > > > > game in town. (CAN jumped at their money like a shark at a

> > > bucket of

> > > > > > chum.)

> > > > > >

> > > > > > Although I've fought for this for many years, I don't think

> > > I'm going

> > > > > > to go. (I'm not 100% sure yet because I'm so torn.)

> > > > > >

> > > > > > I'm going to concentrate on helping the kids that we help

> at

> > > the local

> > > > > > level. The only thing that makes me happy about the autism

> > > community

> > > > > > -- watching a kid make progress. Having him come to

> > > say " pretzel " to

> > > > > > miss cindy after not being able to verbalize all of his

> life.

> > > > > >

> > > > > > I cannot take this political crap anymore. I'm so weary,

> > > frustrated,

> > > > > > and beaten down. But you know that will last about 3 days

> and

> > > then

> > > > > > I'll be back after them with a vengeance.

> > > > > >

> > > > >

> > > >

> > >

> >

>

June 24, 2007

IMHO, Andy Zimmerman does not understand what autism is, its etiology or what SSRI's are intended to do.

PA rally.... I can't shut up anymore> > > > > > > > > > > > > > > > > > > > I don't think I've ever hated another group as much as I hate > > Autism> > > > > Speaks.> > > > > > > > > > For four years a handful of advocates in PA were responsible > > for> > > > > finding, writing, pushing forth, finding sponsors, and > > advocating for> > > > > insurance legislation so insurance companies are forced to > stop> > > > > discriminating against kids with autism.> > > > > > > > > > In comes Autism Speaks. They woo Speaker of the House Dennis > > O'Brien> > > > > (who has always been our champion -- he is a passionate man > > about> > > > > autism because his nephew is very severely affected). Last > > year, we> > > > > got the bill passed unanimously through the House, but a few > > members> > > > > of the Senate (mostly in the pockets of insurance companies) > > stopped> > > > > the bill and quashed it at the 11th hour. We were crushed.> > > > > > > > > > So this year, we reintroduce the bill. Dennis O'Brien leaves > > out> > > > > every advocate who had helped him up to the point -- Autism > > Speaks> > > > > comes in with their hollywood actor from the "Sopranos" (holy > > irony> > > > > there, eh?), and introduce the "new" bill that "they" put > > forth amid> > > > > much fanfare, pomp and circumstance.> > > > > > > > > > Well, now the push has to come for the bill because it's back > > in the> > > > > Senate again being quashed by the same idiots who have > > insurance> > > > > companies in their pocket.> > > > > > > > > > The president of the ASA in burg, PA makes a > reservation > > for the> > > > > Rotunda to have a rally. Who comes in? You guessed it. Autism> > > > > Speaks. I'm here trying to rally people to get on a bus, to > > come to> > > > > burg, to support the bill, etc. etc. I'm making posters > > and> > > > > flyers and phonecalls, etc. I was assured that Autism Speaks > > was> > > > > merely there to pay for the busses and what not.> > > > > > > > > > Next thing I know, on their website, they're touting "THEIR" > > bill in> > > > > Pennsylvania!!!!!!!! I am so ready to explode, I think my > > veins are> > > > > standing out on end in my neck.> > > > > > > > > > I only had 7 people interested in coming, 3 of whom backed > out > > when> > > > > they heard autism speaks had something to do with it. I was > > going to> > > > > go to the rally anyway because I had these lovely AUTISM > > SPEAKS DOES> > > > > NOT SPEAK FOR ME tshirts made... and a 6' banner that says "IN> > > > > PENNSYLVANIA, AUTISMLINK SPEAKS"........ but I am not going. > > In fact,> > > > > nobody that I know in the Pittsburgh area is getting on the > > bus. (I> > > > > had nothing to do with that.)> > > > > > > > > > They're having trouble recruiting participants.> > > > > > > > > > Hrm. Do you think it has to do with their GUERRILLA SCORCHED > > EARTH> > > > > TACTICS? Let's just burn everything else down so we're the > > only one> > > > > left standing, either that or buy them off, and then we're > the > > only> > > > > game in town. (CAN jumped at their money like a shark at a > > bucket of> > > > > chum.) > > > > > > > > > > Although I've fought for this for many years, I don't think > > I'm going> > > > > to go. (I'm not 100% sure yet because I'm so torn.) > > > > > > > > > > I'm going to concentrate on helping the kids that we help at > > the local> > > > > level. The only thing that makes me happy about the autism > > community> > > > > -- watching a kid make progress. Having him come to > > say "pretzel" to> > > > > miss cindy after not being able to verbalize all of his life.> > > > > > > > > > I cannot take this political crap anymore. I'm so weary, > > frustrated,> > > > > and beaten down. But you know that will last about 3 days and > > then> > > > > I'll be back after them with a vengeance.> > > > > > > > > > > > > > >> > > >> > >> >>

June 24, 2007

Like most neuros. Yet people think if their nice it equates to

understanding autism. Go figure. I'd rather my kid's neuro be a jerk &

understand the etiology.

Debi

> > > > > >

> > > > > > Autism Speaks continues to make friends all around. <Insert

> > > > sarcastic tone>

> > > > > >

> > > > > > Pamela

> > > > > >

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

> > > > courage unless

> > > > > > you're scared. "

> > > > > >

> > > > > > Eddie Rickenbacker, top US fighter ace, WWI

> > > > > >

> > > > > > _____

> > > > > >

> > > > > > From: EOHarm

[mailto:EOHarm ]

> > On

> > > > Behalf Of

> > > > > > autismlink

> > > > > > Sent: Saturday, June 23, 2007 10:15 AM

> > > > > > EOHarm

> > > > > > Subject: PA rally.... I can't shut up anymore

> > > > > >

> > > > > > I don't think I've ever hated another group as much as I

hate

> > > Autism

> > > > > > Speaks.

> > > > > >

> > > > > > For four years a handful of advocates in PA were

responsible

> > > for

> > > > > > finding, writing, pushing forth, finding sponsors, and

> > > advocating for

> > > > > > insurance legislation so insurance companies are forced to

> > stop

> > > > > > discriminating against kids with autism.

> > > > > >

> > > > > > In comes Autism Speaks. They woo Speaker of the House

Dennis

> > > O'Brien

> > > > > > (who has always been our champion -- he is a passionate man

> > > about

> > > > > > autism because his nephew is very severely affected). Last

> > > year, we

> > > > > > got the bill passed unanimously through the House, but a

few

> > > members

> > > > > > of the Senate (mostly in the pockets of insurance

companies)

> > > stopped

> > > > > > the bill and quashed it at the 11th hour. We were crushed.

> > > > > >

> > > > > > So this year, we reintroduce the bill. Dennis O'Brien

leaves

> > > out

> > > > > > every advocate who had helped him up to the point -- Autism

> > > Speaks

> > > > > > comes in with their hollywood actor from the " Sopranos "

(holy

> > > irony

> > > > > > there, eh?), and introduce the " new " bill that " they " put

> > > forth amid

> > > > > > much fanfare, pomp and circumstance.

> > > > > >

> > > > > > Well, now the push has to come for the bill because it's

back

> > > in the

> > > > > > Senate again being quashed by the same idiots who have

> > > insurance

> > > > > > companies in their pocket.

> > > > > >

> > > > > > The president of the ASA in burg, PA makes a

> > reservation

> > > for the

> > > > > > Rotunda to have a rally. Who comes in? You guessed it.

Autism

> > > > > > Speaks. I'm here trying to rally people to get on a bus, to

> > > come to

> > > > > > burg, to support the bill, etc. etc. I'm making

posters

> > > and

> > > > > > flyers and phonecalls, etc. I was assured that Autism

Speaks

> > > was

> > > > > > merely there to pay for the busses and what not.

> > > > > >

> > > > > > Next thing I know, on their website, they're touting

" THEIR "

> > > bill in

> > > > > > Pennsylvania!!!!!!!! I am so ready to explode, I think my

> > > veins are

> > > > > > standing out on end in my neck.

> > > > > >

> > > > > > I only had 7 people interested in coming, 3 of whom backed

> > out

> > > when

> > > > > > they heard autism speaks had something to do with it. I was

> > > going to

> > > > > > go to the rally anyway because I had these lovely AUTISM

> > > SPEAKS DOES

> > > > > > NOT SPEAK FOR ME tshirts made... and a 6' banner that

says " IN

> > > > > > PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not

going.

> > > In fact,

> > > > > > nobody that I know in the Pittsburgh area is getting on the

> > > bus. (I

> > > > > > had nothing to do with that.)

> > > > > >

> > > > > > They're having trouble recruiting participants.

> > > > > >

> > > > > > Hrm. Do you think it has to do with their GUERRILLA

SCORCHED

> > > EARTH

> > > > > > TACTICS? Let's just burn everything else down so we're the

> > > only one

> > > > > > left standing, either that or buy them off, and then we're

> > the

> > > only

> > > > > > game in town. (CAN jumped at their money like a shark at a

> > > bucket of

> > > > > > chum.)

> > > > > >

> > > > > > Although I've fought for this for many years, I don't think

> > > I'm going

> > > > > > to go. (I'm not 100% sure yet because I'm so torn.)

> > > > > >

> > > > > > I'm going to concentrate on helping the kids that we

help at

> > > the local

> > > > > > level. The only thing that makes me happy about the autism

> > > community

> > > > > > -- watching a kid make progress. Having him come to

> > > say " pretzel " to

> > > > > > miss cindy after not being able to verbalize all of his

life.

> > > > > >

> > > > > > I cannot take this political crap anymore. I'm so weary,

> > > frustrated,

> > > > > > and beaten down. But you know that will last about 3

days and

> > > then

> > > > > > I'll be back after them with a vengeance.

> > > > > >

> > > > >

> > > >

> > >

> >

>

June 24, 2007

Then I interpreted your question incorrectly, sorry. I don't know the answer to your newly clarified question.

Heidi

From: Krakow <rkrakow@...>Reply- EOHarm EOHarm Subject: Re: Re: PA rally.... I can't shut up anymoreDate: Sat, 23 Jun 2007 23:54:28 -0400>Thanks for pointing that out to me. I did not, however, suggest >otherwise in my message. I have gotten two responses to my question, >neither of which have answered my question, which is a >straightforward one. I simply wanted to know whether or not any of >the 3 are parents of an affected child. My question contains no >opinion as to whether any of these people are or will be effective,

June 24, 2007

.. YOU SCREAM AND SCREAM FOR ME.... it is the screaming that gets us heard.... I FEEL EVERY child with autism is ours... and the fight is for them. YOU ARE RIGHT ON.... LiaSee what's free at AOL.com.

June 24, 2007

Actually, it would be nice if you did shut up. Why focus so much of

your energy on hating someone in the autism community so much? Maybe

you are better off helping local kids in your area, maybe even your

own kids. You seemed burned out, . Time to move on. (IMO)

>

> I don't think I've ever hated another group as much as I hate Autism

> Speaks.

>

> For four years a handful of advocates in PA were responsible for

> finding, writing, pushing forth, finding sponsors, and advocating

for

> insurance legislation so insurance companies are forced to stop

> discriminating against kids with autism.

>

> In comes Autism Speaks. They woo Speaker of the House Dennis

O'Brien

> (who has always been our champion -- he is a passionate man about

> autism because his nephew is very severely affected). Last year, we

> got the bill passed unanimously through the House, but a few members

> of the Senate (mostly in the pockets of insurance companies) stopped

> the bill and quashed it at the 11th hour. We were crushed.

>

> So this year, we reintroduce the bill. Dennis O'Brien leaves out

> every advocate who had helped him up to the point -- Autism Speaks

> comes in with their hollywood actor from the " Sopranos " (holy irony

> there, eh?), and introduce the " new " bill that " they " put forth amid

> much fanfare, pomp and circumstance.

>

> Well, now the push has to come for the bill because it's back in the

> Senate again being quashed by the same idiots who have insurance

> companies in their pocket.

>

> The president of the ASA in burg, PA makes a reservation for

the

> Rotunda to have a rally. Who comes in? You guessed it. Autism

> Speaks. I'm here trying to rally people to get on a bus, to come to

> burg, to support the bill, etc. etc. I'm making posters and

> flyers and phonecalls, etc. I was assured that Autism Speaks was

> merely there to pay for the busses and what not.

>

> Next thing I know, on their website, they're touting " THEIR " bill in

> Pennsylvania!!!!!!!! I am so ready to explode, I think my veins are

> standing out on end in my neck.

>

> I only had 7 people interested in coming, 3 of whom backed out when

> they heard autism speaks had something to do with it. I was going

to

> go to the rally anyway because I had these lovely AUTISM SPEAKS DOES

> NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

> PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not going. In

fact,

> nobody that I know in the Pittsburgh area is getting on the bus. (I

> had nothing to do with that.)

>

> They're having trouble recruiting participants.

>

> Hrm. Do you think it has to do with their GUERRILLA SCORCHED EARTH

> TACTICS? Let's just burn everything else down so we're the only one

> left standing, either that or buy them off, and then we're the only

> game in town. (CAN jumped at their money like a shark at a bucket

of

> chum.)

>

> Although I've fought for this for many years, I don't think I'm

going

> to go. (I'm not 100% sure yet because I'm so torn.)

>

> I'm going to concentrate on helping the kids that we help at the

local

> level. The only thing that makes me happy about the autism

community

> -- watching a kid make progress. Having him come to say " pretzel "

to

> miss cindy after not being able to verbalize all of his life.

>

> I cannot take this political crap anymore. I'm so weary, frustrated,

> and beaten down. But you know that will last about 3 days and then

> I'll be back after them with a vengeance.

>

June 24, 2007

Verbal/written criticism can oftentimes be the best way to effect change.

Re: PA rally.... I can't shut up anymore

Actually, it would be nice if you did shut up. Why focus so much of your energy on hating someone in the autism community so much? Maybe you are better off helping local kids in your area, maybe even your own kids. You seemed burned out, . Time to move on. (IMO)>> I don't think I've ever hated another group as much as I hate Autism> Speaks.> > For four years a handful of advocates in PA were responsible for> finding, writing, pushing forth, finding sponsors, and advocating for> insurance legislation so insurance companies are forced to stop> discriminating against kids with autism.> > In comes Autism Speaks. They woo Speaker of the House Dennis O'Brien> (who has always been our champion -- he is a passionate man about> autism because his nephew is very severely affected). Last year, we> got the bill passed unanimously through the House, but a few members> of the Senate (mostly in the pockets of insurance companies) stopped> the bill and quashed it at the 11th hour. We were crushed.> > So this year, we reintroduce the bill. Dennis O'Brien leaves out> every advocate who had helped him up to the point -- Autism Speaks> comes in with their hollywood actor from the "Sopranos" (holy irony> there, eh?), and introduce the "new" bill that "they" put forth amid> much fanfare, pomp and circumstance.> > Well, now the push has to come for the bill because it's back in the> Senate again being quashed by the same idiots who have insurance> companies in their pocket.> > The president of the ASA in burg, PA makes a reservation for the> Rotunda to have a rally. Who comes in? You guessed it. Autism> Speaks. I'm here trying to rally people to get on a bus, to come to> burg, to support the bill, etc. etc. I'm making posters and> flyers and phonecalls, etc. I was assured that Autism Speaks was> merely there to pay for the busses and what not.> > Next thing I know, on their website, they're touting "THEIR" bill in> Pennsylvania!!!!!!!! I am so ready to explode, I think my veins are> standing out on end in my neck.> > I only had 7 people interested in coming, 3 of whom backed out when> they heard autism speaks had something to do with it. I was going to> go to the rally anyway because I had these lovely AUTISM SPEAKS DOES> NOT SPEAK FOR ME tshirts made... and a 6' banner that says "IN> PENNSYLVANIA, AUTISMLINK SPEAKS"........ but I am not going. In fact,> nobody that I know in the Pittsburgh area is getting on the bus. (I> had nothing to do with that.)> > They're having trouble recruiting participants.> > Hrm. Do you think it has to do with their GUERRILLA SCORCHED EARTH> TACTICS? Let's just burn everything else down so we're the only one> left standing, either that or buy them off, and then we're the only> game in town. (CAN jumped at their money like a shark at a bucket of> chum.) > > Although I've fought for this for many years, I don't think I'm going> to go. (I'm not 100% sure yet because I'm so torn.) > > I'm going to concentrate on helping the kids that we help at the local> level. The only thing that makes me happy about the autism community> -- watching a kid make progress. Having him come to say "pretzel" to> miss cindy after not being able to verbalize all of his life.> > I cannot take this political crap anymore. I'm so weary, frustrated,> and beaten down. But you know that will last about 3 days and then> I'll be back after them with a vengeance.> > >

June 24, 2007

Hey Mercerdad13,

I think you personal comments are inappropriate and uncalled for.

Especially your judgement of as a parent. What do you know

about 's family, and what gives yuou the right to judge her.

's contibutions to the autism community are long standing and

extensive. Perhaps you would like to share with us your

accomplishments?

And I think youmight want to consider an apology. If you have issues

about politics or policy fire away, but you went way beyond that

into areas where you have no business.

Gilmore

> >

> > I don't think I've ever hated another group as much as I hate

Autism

> > Speaks.

> >

> > For four years a handful of advocates in PA were responsible for

> > finding, writing, pushing forth, finding sponsors, and

advocating

> for

> > insurance legislation so insurance companies are forced to stop

> > discriminating against kids with autism.

> >

> > In comes Autism Speaks. They woo Speaker of the House Dennis

> O'Brien

> > (who has always been our champion -- he is a passionate man about

> > autism because his nephew is very severely affected). Last

year, we

> > got the bill passed unanimously through the House, but a few

members

> > of the Senate (mostly in the pockets of insurance companies)

stopped

> > the bill and quashed it at the 11th hour. We were crushed.

> >

> > So this year, we reintroduce the bill. Dennis O'Brien leaves out

> > every advocate who had helped him up to the point -- Autism

Speaks

> > comes in with their hollywood actor from the " Sopranos " (holy

irony

> > there, eh?), and introduce the " new " bill that " they " put forth

amid

> > much fanfare, pomp and circumstance.

> >

> > Well, now the push has to come for the bill because it's back in

the

> > Senate again being quashed by the same idiots who have insurance

> > companies in their pocket.

> >

> > The president of the ASA in burg, PA makes a reservation

for

> the

> > Rotunda to have a rally. Who comes in? You guessed it. Autism

> > Speaks. I'm here trying to rally people to get on a bus, to

come to

> > burg, to support the bill, etc. etc. I'm making posters

and

> > flyers and phonecalls, etc. I was assured that Autism Speaks was

> > merely there to pay for the busses and what not.

> >

> > Next thing I know, on their website, they're touting " THEIR "

bill in

> > Pennsylvania!!!!!!!! I am so ready to explode, I think my veins

are

> > standing out on end in my neck.

> >

> > I only had 7 people interested in coming, 3 of whom backed out

when

> > they heard autism speaks had something to do with it. I was

going

> to

> > go to the rally anyway because I had these lovely AUTISM SPEAKS

DOES

> > NOT SPEAK FOR ME tshirts made... and a 6' banner that says " IN

> > PENNSYLVANIA, AUTISMLINK SPEAKS " ........ but I am not going. In

> fact,

> > nobody that I know in the Pittsburgh area is getting on the

bus. (I

> > had nothing to do with that.)

> >

> > They're having trouble recruiting participants.

> >

> > Hrm. Do you think it has to do with their GUERRILLA SCORCHED

EARTH

> > TACTICS? Let's just burn everything else down so we're the only

one

> > left standing, either that or buy them off, and then we're the

only

> > game in town. (CAN jumped at their money like a shark at a

bucket

> of

> > chum.)

> >

> > Although I've fought for this for many years, I don't think I'm

> going

> > to go. (I'm not 100% sure yet because I'm so torn.)

> >

> > I'm going to concentrate on helping the kids that we help at the

> local

> > level. The only thing that makes me happy about the autism

> community

> > -- watching a kid make progress. Having him come to

say " pretzel "

> to

> > miss cindy after not being able to verbalize all of his life.

> >

> > I cannot take this political crap anymore. I'm so weary,

frustrated,

> > and beaten down. But you know that will last about 3 days and

then

> > I'll be back after them with a vengeance.

> >

>

June 24, 2007

The tone of your comment is so offensive - did you really intend to be that offensive to an autism Mom, who is clearly fighting for other parents & children with autism?? Maybe before hitting the 'send' button next time, you can read what you wrote, and think about how you'd like to be the receiver of the message. Are you the parent of a child with autism? Because I am - the mom of two kids on the autism spectrum, and I don't appreciate your personal attack on someone who is very actively trying to help others. JMHO. Mariemercerdad13 <wmpenn200@...> wrote: Actually, it would be nice if you did shut up. Why focus so much of your energy on hating someone in the autism community so much? Maybe you are better off helping local kids in your area, maybe even your own kids. You seemed burned out, . Time to move on. (IMO)>> I don't think I've ever hated another group as much as I hate Autism> Speaks.> > For four years a handful of advocates in PA were responsible for> finding, writing, pushing forth, finding sponsors, and advocating for> insurance legislation so insurance companies are forced to stop> discriminating against kids with autism.> > In comes Autism Speaks. They woo Speaker of the House

Dennis O'Brien> (who has always been our champion -- he is a passionate man about> autism because his nephew is very severely affected). Last year, we> got the bill passed unanimously through the House, but a few members> of the Senate (mostly in the pockets of insurance companies) stopped> the bill and quashed it at the 11th hour. We were crushed.> > So this year, we reintroduce the bill. Dennis O'Brien leaves out> every advocate who had helped him up to the point -- Autism Speaks> comes in with their hollywood actor from the "Sopranos" (holy irony> there, eh?), and introduce the "new" bill that "they" put forth amid> much fanfare, pomp and circumstance.> > Well, now the push has to come for the bill because it's back in the> Senate again being quashed by the same idiots who have insurance> companies in their pocket.> > The president of the ASA in

burg, PA makes a reservation for the> Rotunda to have a rally. Who comes in? You guessed it. Autism> Speaks. I'm here trying to rally people to get on a bus, to come to> burg, to support the bill, etc. etc. I'm making posters and> flyers and phonecalls, etc. I was assured that Autism Speaks was> merely there to pay for the busses and what not.> > Next thing I know, on their website, they're touting "THEIR" bill in> Pennsylvania!!!!!!!! I am so ready to explode, I think my veins are> standing out on end in my neck.> > I only had 7 people interested in coming, 3 of whom backed out when> they heard autism speaks had something to do with it. I was going to> go to the rally anyway because I had these lovely AUTISM SPEAKS DOES> NOT SPEAK FOR ME tshirts made... and a 6' banner that says "IN> PENNSYLVANIA, AUTISMLINK SPEAKS"........ but I am not

going. In fact,> nobody that I know in the Pittsburgh area is getting on the bus. (I> had nothing to do with that.)> > They're having trouble recruiting participants.> > Hrm. Do you think it has to do with their GUERRILLA SCORCHED EARTH> TACTICS? Let's just burn everything else down so we're the only one> left standing, either that or buy them off, and then we're the only> game in town. (CAN jumped at their money like a shark at a bucket of> chum.) > > Although I've fought for this for many years, I don't think I'm going> to go. (I'm not 100% sure yet because I'm so torn.) > > I'm going to concentrate on helping the kids that we help at the local> level. The only thing that makes me happy about the autism community> -- watching a kid make progress. Having him come to say "pretzel" to> miss cindy after not being able to

verbalize all of his life.> > I cannot take this political crap anymore. I'm so weary, frustrated,> and beaten down. But you know that will last about 3 days and then> I'll be back after them with a vengeance.> > >

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Games.

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Re: PA rally.... I can't shut up anymore

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