Re: Wagers for AS shuting down??

[Guest guest]

Ellen, I recall Ray was quite bitter about the whole NJ expierence and

the lack of funding for those issues. He can articulate it better than

I. I will ask him to detail what the issues were so all can see. There

may be something to learn from it.

Marty

> > > > > > > > > > >

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

> think

> > > what

> > > > she

> > > > > > > said was

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

> > > saying

> > > > is

> > > > > > > there

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

> been

> > > > using the

> > > > > > > > > > > research money in a certain direction can't change

> > > course,

> > > > then

> > > > > > > let

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

> people,

> > > it

> > > > was

> > > > > > > toward

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

> intent.

> > > > Saying

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

> > > > > > > > > > >

> > > > > > > > > > > I totally understand what your saying that grant

> money

> > > > often has

> > > > > > > > > > > stipulations attached and genetic does have a

> place.

> > > But,

> > > > only a

> > > > > > > part

> > > > > > > > > > > of the place. As I've said before, no more than

> 33%

> > > > genetic, at

> > > > > > > least

> > > > > > > > > > > 33% environmental, and 33% behavioral, then

> you'll have

> > > a

> > > > good

> > > > > > > > > > > blending of how to help the kids.

> > > > > > > > > > >

> > > > > > > > > > > Debi

> > > > > > > > > > >

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > ----------------------------------------------------------\

> > > > ------

> > > > > Luggage? GPS? Comic books?

> > > > > Check out fitting gifts for grads at Search.

> > > > >

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

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

> > > Luggage? GPS? Comic books?

> > > Check out fitting gifts for grads at Search.

> > >

> >

>

[Guest guest]

Do you Ellen or anyone else here know these people personally that we

can tell them that our entire community of parents is willing to walk

with them in these presentations and RFP's to AS?

If they are then turned down imagine the furor we could cause stating

specifically that this is a project that the " Autism Community " wants

and is being turned away by the supposed " One Umbrella " organization.

The more I think about it I really believe this is the only way to go

to get some of these funds they are collecting in our children's

names put to use we think they should be...

> > > Henry, I agree with you most often but in this

case

> I

> > don't see how this has gotten so unruly. Marty may have defended

> > NAAR, we most certainly don't have to agree with that stance, but

I

> > didn't really see an AS butt kissing going on in his posts. I

> thought

> > I put out a good question/suggestion earlier and was waiting for a

> > response, instead more posturing. I like both of you from what

> > responses and queries I've seen, and am not defending anything so

> > please don't bring down the gauntlet on me for saying this

> but, " PLAY

> > NICE! Remember I've been watching Toy Story all day. -

>

> > >

>

[Guest guest]

Ray and I have had numerous conversations about this.

After sitting on the council for a year and being frustrated, plus a

difficlt pregancy last year, I had to walk away.

Ellen

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

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

> > think

> > > > what

> > > > > she

> > > > > > > > said was

> > > > > > > > > > > > not arrogant or mean-spirited. What I took

she was

> > > > saying

> > > > > is

> > > > > > > > there

> > > > > > > > > > > > hasn't been enough progress and if those who

have

> > been

> > > > > using the

> > > > > > > > > > > > research money in a certain direction can't

change

> > > > course,

> > > > > then

> > > > > > > > let

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

> > people,

> > > > it

> > > > > was

> > > > > > > > toward

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

her

> > intent.

> > > > > Saying

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

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

> > > > > > > > > > > > I totally understand what your saying that

grant

> > money

> > > > > often has

> > > > > > > > > > > > stipulations attached and genetic does have a

> > place.

> > > > But,

> > > > > only a

> > > > > > > > part

> > > > > > > > > > > > of the place. As I've said before, no more

than

> > 33%

> > > > > genetic, at

> > > > > > > > least

> > > > > > > > > > > > 33% environmental, and 33% behavioral, then

> > you'll have

> > > > a

> > > > > good

> > > > > > > > > > > > blending of how to help the kids.

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

> > > > > > > > > > > > Debi

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

> > > > > > > > > > >

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > ----------------------------------------------------------\

> > > > > ------

> > > > > > Luggage? GPS? Comic books?

> > > > > > Check out fitting gifts for grads at Search.

> > > > > >

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

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

> > > > Luggage? GPS? Comic books?

> > > > Check out fitting gifts for grads at Search.

> > > >

> > >

> >

>

[Guest guest]

This is actually a good idea.

Jim Oleske has been unable to get funding for reseach into auotimmune

issues and autism but I think he has been successful in other realms.

Vijendra Singh, another researcher into autoimmune, MMR, and autism

issues has been unable to gain any funding because of the past

controversial research that he has done.

I have both of their contact information I think. I or Ray will

reach out to them and see if this is an avenue that they might want

to pursue.

Ellen

> > > > Henry, I agree with you most often but in this

> case

> > I

> > > don't see how this has gotten so unruly. Marty may have

defended

> > > NAAR, we most certainly don't have to agree with that stance,

but

> I

> > > didn't really see an AS butt kissing going on in his posts. I

> > thought

> > > I put out a good question/suggestion earlier and was waiting

for a

> > > response, instead more posturing. I like both of you from what

> > > responses and queries I've seen, and am not defending anything

so

> > > please don't bring down the gauntlet on me for saying this

> > but, " PLAY

> > > NICE! Remember I've been watching Toy Story all day. -

> >

> > > >

> >

>

[Guest guest]

PLEASE don't have Ray go thru his boat load of lies and re-writing of History about the Gov Council. Ellen, the point that you sat on the council yourself is a very good one. You were welcome to try to change the structure or speak up about your grievances when you were in the meetings. And why did TAAP not provide another representative when you were on Med LOA? It is so easy for people to complain and blame and not take responsibility for something they were just as responsible for as the current members of the council. The Gov council is open to public and meetings are posted on the website.

Heidi

From: "martinx2us" <martyx2@...>Reply-EOHarm To: EOHarm Subject: Re: Wagers for AS shuting down??Date: Thu, 05 Jul 2007 18:14:21 -0000

Ellen, I recall Ray was quite bitter about the whole NJ expierence andthe lack of funding for those issues. He can articulate it better thanI. I will ask him to detail what the issues were so all can see. Theremay be something to learn from it.Marty>> ,> Youre exactly right....I know for a fact that there is a certain> NJ State funded council, The Governors Council on Autism, that says> they never get any "good proposals" in regards to environmental> research....and this isnt just for research into vaccines......but> they have and they still dont fund it. I sat on the council for TAAP> one year and Ray Gallup had in the past for a few years, and

[Guest guest]

Heidi,

I dont know if you recall, but right after that RFP was when I

went

out on medical LOA......I cant explain why April who was in charge of

TAAP at the time didnt appoint a replacement as I was on a medical

LOA

and I wasnt involved in anything inregrds to this .....also this is

the time I also

resigned

from my role as the president of the NJ chapter of TAAP......BUT I

can tell you I did see firsthand

a worthwhile proposal submitted by Jim Oleske go unfunded because the

SAB who was handpicked that year by Emmanuel Diccio-Bloom (who now

sits

on the Scientific Advisory committee for AS and sat on the SAC for

NAAR

prior to that) and Bob Trelstadt turn it down..2 doctors/researchers

who see no need to do this type of research because they dont believe

there is a connection ..I didnt hear this second hand from Ray.....

I have gotten tons of correspondence from both Oleske and Singh who

dont do this type of research anymore because they cant get funded

for it. They feel like theyre wasting their time. I dont know about

subsequent years but the fact that it happened once means it happened

one too many times. (something else I havent heard from just Ray)

I know youve sat on the council a long time and I respect everything

the council members have done and tried to do in good intentions but

the council members were not involved the year I sat on the council

in

picking the SAB, well not all of them, Diccio-Bloom was allowed to

eventhough he served as a

representative for NAAR and ended up benfiting from the RFP that year

with research money. Also, he has a seat despite the organiztion

no longer existing. I am in no way criticizing you as a person but

the whole RFP process at the council.

The Governors Council uses the same type of procedure in picking

reseach proposals as AS...they only release info on the proposals

they fund, not the ones they turned down.

I dont plan on having a personal pissing contest with you or anyone

about this. I know what I saw and it was less than desirable.

Ellen

[Guest guest]

why do you think it was Manny who chose the SAB? It was always Trelstad in charge. You think he partnered with Manny that time?

From: "Ellen Sweeney" <support4autism@...>Reply-EOHarm To: EOHarm Subject: Re: Wagers for AS shuting down??Date: Thu, 05 Jul 2007 20:26:32 -0000

Heidi,I dont know if you recall, but right after that RFP was when I went out on medical LOA......I cant explain why April who was in charge of TAAP at the time didnt appoint a replacement as I was on a medical LOA and I wasnt involved in anything inregrds to this .....also this is the time I also resigned

[Guest guest]

My intention was not to rip on Marty. Just trying to say that when

you've worked for and believed in an organization for awhile, it's

hard to realize that they're falling from grace. (I'm trying to

express what I mean here appropriately.....)

For a few years, I kept supporting them, but my eyebrows would raise

at some of the things they were doing and how they were treating

people. Eventually I realized what they were all about.

I would venture to guess that Marty, having put a lot of work into

NAAR, is having a hard time believing what's become of the

organization he used to support. (Tell me if I'm misrepresenting you

here, Marty.)

I think he's still trying to see some of the good.

Honestly, they've been doing some good here in PA as far as lobbying

for our insurance bill. But overall, I still think they're dangerous,

I don't like the messages they send, I think they should be funding

more biomedical research....... yadda yadda. All the stuff you guys

think.

All I was saying to Marty was -- you'll soon realize that you wasted

some time helping them. It's a tough pill to swallow.

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

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

> think

> > > > what

> > > > > she

> > > > > > > > said was

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

> > > > saying

> > > > > is

> > > > > > > > there

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

> been

> > > > > using the

> > > > > > > > > > > > research money in a certain direction can't change

> > > > course,

> > > > > then

> > > > > > > > let

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

> people,

> > > > it

> > > > > was

> > > > > > > > toward

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

> > > intent.

> > > > > Saying

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

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

> > > > > > > > > > > > I totally understand what your saying that grant

> money

> > > > > often has

> > > > > > > > > > > > stipulations attached and genetic does have a

> place.

> > > > But,

> > > > > only a

> > > > > > > > part

> > > > > > > > > > > > of the place. As I've said before, no more than

> 33%

> > > > > genetic, at

> > > > > > > > least

> > > > > > > > > > > > 33% environmental, and 33% behavioral, then you'll

> > > have

> > > > a

> > > > > good

> > > > > > > > > > > > blending of how to help the kids.

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

> > > > > > > > > > > > Debi

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

> > > > > > > > > > >

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > ----------------------------------------------------------\

> > > > > ------

> > > > > > Luggage? GPS? Comic books?

> > > > > > Check out fitting gifts for grads at Search.

> > > > > >

> > > > >

> > > >

> > >

> >

> >

> >

> >

> >

> >

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

> > Building a website is a piece of cake.

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

> >

>

[Guest guest]

Oh thank god someone can write today. This expresses exactly what I

was trying to say. I'm a bit disfluent today!

> > > > > > > > > > >

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

think

> > > what

> > > > she

> > > > > > > said was

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

> > > saying

> > > > is

> > > > > > > there

> > > > > > > > > > > hasn't been enough progress and if those who

have been

> > > > using the

> > > > > > > > > > > research money in a certain direction can't change

> > > course,

> > > > then

> > > > > > > let

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

people,

> > > it

> > > > was

> > > > > > > toward

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

> > intent.

> > > > Saying

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

> > > > > > > > > > >

> > > > > > > > > > > I totally understand what your saying that

grant money

> > > > often has

> > > > > > > > > > > stipulations attached and genetic does have a

place.

> > > But,

> > > > only a

> > > > > > > part

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

> > > > genetic, at

> > > > > > > least

> > > > > > > > > > > 33% environmental, and 33% behavioral, then you'll

> > have

> > > a

> > > > good

> > > > > > > > > > > blending of how to help the kids.

> > > > > > > > > > >

> > > > > > > > > > > Debi

> > > > > > > > > > >

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > ----------------------------------------------------------\

> > > > ------

> > > > > Luggage? GPS? Comic books?

> > > > > Check out fitting gifts for grads at Search.

> > > > >

> > > >

> > >

> >

>

>

>

>

>

>

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

> Be a better Heartthrob. Get better relationship answers from someone

who knows.

> Answers - Check it out.

>

[Guest guest]

> > > > > >

> > > > > > If Bob and Suzanne had any integrity they would walk

> > > away from

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

> > > $$$$$$$$

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

> chances

> > > with the

> > > > > > bouncer at the Pearly Gates.

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Andy, Do you have any feel for about what percentage are getting

good results? I kept records of every dose of chelating drugs I

used. I wonder if many others did the same.

> > > > > > >

> > > > > > > If Bob and Suzanne had any integrity they would

walk

> > > > away from

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

the

> > > > $$$$$$$$

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

> > chances

> > > > with the

> > > > > > > bouncer at the Pearly Gates.

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Heidi,

I sat at the table along with you and all the others when

Trelstadt and Manny DiCiccio-Bloom pulled out printouts of

backgrounds of researchers for us to look at. They both said these

were the guys/gals that were chairing the SAB and they consulted one

another about them away from the council. Manny was as much in

charge of chairing the SAB as Trelstadt the year that I sat on the

council.

Personally in hindsight I dont find any of this surprising

considering the level of corruption that has come out of UMDNJ in the

recent past. (Its all been in the NJ papers in the last year or two.)

Again, this isnt a reflection on you or the COSAC rep, its a

reflection on the NAAR rep (who not surprisingly sits on the SAC of

AS), the SAB, and the inadequacies and shortcomings of that aspect of

the council.

Ellen

[Guest guest]

I will have to ask the COSAC rep if he remembers this as I don't.

the corruption at UMDNJ has nothing to do with the Gov Council, it is all about overbilling insurance companies, etc.

The new legislation will take the council out of UMDNJ and will not allow members of the council to apply for grant money.

From: "Ellen Sweeney" <support4autism@...>Reply-EOHarm To: EOHarm Subject: Re: Wagers for AS shuting down??Date: Fri, 06 Jul 2007 00:09:52 -0000

Heidi,I sat at the table along with you and all the others when Trelstadt and Manny DiCiccio-Bloom pulled out printouts of backgrounds of researchers for us to look at. They both said these were the guys/gals that were chairing the SAB and they consulted one another about them away from the council. Manny was as much in charge of chairing the SAB as Trelstadt the year that I sat on the council. Personally in hindsight I dont find any of this surprising considering the level of corruption that has come out of UMDNJ in the recent past. (Its all been in the NJ papers in the last year or two.)Again, this isnt a reflection on you or the COSAC rep, its a reflection on the NAAR rep (who not surprisingly sits on the SAC of AS), the SAB, and the inadequacies and shortcomings of that aspect of the council.Ellen

[Guest guest]

I can say for certain I saw improvements in Allie when we did Andy's

protocol with ALA/every 3-4hrs. Our problem got to be after about 10

rounds she refused all liquids except water, wouldn't at that time

swallow pills, and we couldn't afford for her to stop drinking water,

so we stopped. Now we are doing IV chelation (Bradstreet protocol),

which is helping her tremendously and she asks for it, so I wanna

stick with what's working, though I wouldn't hesitate for a sec to go

back to Andy's if need-be.

Debi

> >

> > I'd love to see a research project on the Autism Mercury group to see

> > how many people have tried Andy Cutler's protocol, how many rounds of

> > chelation they did, what drugs they used and what symptoms improved

> > or not. You wouldn't need to be a scientist, just a good record

> > keeper/statistician.

>

> And a pretty good detective, and thorough background checker.

>

> A lot of people bounce on and off, you'd have to find them to get a

good sample.

>

> Many people do not have great memories, you'd hvae to find their old

posts on the web

> and compare them with the current story to select the subset of

people where their

> reporting is constant so that you can believe you have accurate

information.

>

> Then you'd have to work with them to get the information you need,

instead of what they

> thought to keep track of.

>

> Andy

>

[Guest guest]

That seems like a particularly fair analysis from .

Re: Wagers for AS shuting down??

My intention was not to rip on Marty. Just trying to say that whenyou've worked for and believed in an organization for awhile, it'shard to realize that they're falling from grace. (I'm trying toexpress what I mean here appropriately.....)For a few years, I kept supporting them, but my eyebrows would raiseat some of the things they were doing and how they were treatingpeople. Eventually I realized what they were all about.I would venture to guess that Marty, having put a lot of work intoNAAR, is having a hard time believing what's become of theorganization he used to support. (Tell me if I'm misrepresenting youhere, Marty.)I think he's still trying to see some of the good. Honestly, they've been doing some good here in PA as far as lobbyingfor our insurance bill. But overall, I still think they're dangerous,I don't like the messages they send, I think they should be fundingmore biomedical research....... yadda yadda. All the stuff you guysthink.All I was saying to Marty was -- you'll soon realize that you wastedsome time helping them. It's a tough pill to swallow.> > > > > > > > > > > >> > > > > > > > > > > > As one who was never involved in NAAR or AS, I> think> > > > what> > > > > she> > > > > > > > said was> > > > > > > > > > > > not arrogant or mean-spirited. What I took she was> > > > saying> > > > > is> > > > > > > > there> > > > > > > > > > > > hasn't been enough progress and if those who have> been> > > > > using the> > > > > > > > > > > > research money in a certain direction can't change> > > > course,> > > > > then> > > > > > > > let> > > > > > > > > > > > someone else. IMO, her statement wasn't toward> people,> > > > it> > > > > was> > > > > > > > toward> > > > > > > > > > > > answers. She even came back & said it wasn't her> > > intent.> > > > > Saying> > > > > > > > > > > > answers need to be found isn't to me arrogant.> > > > > > > > > > > >> > > > > > > > > > > > I totally understand what your saying that grant> money> > > > > often has> > > > > > > > > > > > stipulations attached and genetic does have a> place.> > > > But,> > > > > only a> > > > > > > > part> > > > > > > > > > > > of the place. As I've said before, no more than> 33%> > > > > genetic, at> > > > > > > > least> > > > > > > > > > > > 33% environmental, and 33% behavioral, then you'll> > > have> > > > a> > > > > good> > > > > > > > > > > > blending of how to help the kids.> > > > > > > > > > > >> > > > > > > > > > > > Debi> > > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > ----------------------------------------------------------\> > > > > ------> > > > > > Luggage? GPS? Comic books?> > > > > > Check out fitting gifts for grads at Search.> > > > > >> > > > >> > > >> > >> >> >> >> >> >> >> > ---------------------------------> > Building a website is a piece of cake.> > Small Business gives you all the tools to get online.> >>

[Guest guest]

Regardless of what the COSAC rep tells you, it did happen. I have a

pretty good memory and this was one of the main reasons despite being

told by my ob/gyn to do otherwise I was considering still coming to

council meetings. (this would have been a major stressor!)

The scandal at UMDNJ goes beyond billing. It goes along with members

of the staff giving people no show jobs in return for favors and

referrals to UMDNJ. One may also assume that there could have been

favoritism in selecting who gets what research money from the council

and Trelstadt's role as heading the SAB. Im not saying its a

definite occurrence but a possibility. The fact that Diccio-Bloom was

even allowed a say in who was part of the SAB that was considering

his application for grant money which he ultimately received is a

conflict. I am glad to hear the new legislation will take care of

this.

I hope that once that is taken care of maybe you and the other

impartial council members will consider tackling the issue of a more

impartial SAB. Maybe by allowing the council representatves for each

group represented being allowed to make suggestions on who to ask to

staff the SAB.

Also Id address the fact since NAAR no longer exists and is now part

of a NY-based autism agency, Autism Speaks, they should no longer

have a representative on the NJ Governors Council on Autism. But I

understand how you might be reluctant with you being the

representative for CAN which is now also a part of AS.

all the best,

Ellen