Re:Autism Speaks' Clarification Statement re: Wall Street Journal

[Guest guest]

I join in wholehearted defense of KB.

Please lets not bite the hand trying to feed us....

> > >

> > >So did Singer get her retraction published in the WSJ?

> > > Or did Autism Speaks allow (or encourage?) the

> > > misquote in the high-profile WSJ (which is read by

> > > nearly all the bigshots, movers and shakers in the US)

> > > and publish their clarification only on a few obscure

> > > websites where only those of us driven by the charade

> > > would bother to see it?

> > >

> > > Autism Speaks' Clarification Statement re: Wall Street

> > > Journal

> > > Posted by: " schaferatsprynet " schafer@

> > > schaferatsprynet

> > > Fri Mar 2, 2007 7:23 pm (PST)

> > > Autism Speaks' Clarification Statement re: Wall Street

> > > Journal

> > >

> > >http://www.autismsp eaks.org/ wsj_statement. php

> > >

> > > __________________________________________________________

> > > TV dinner still cooling?

> > > Check out " Tonight's Picks " on TV.

> > >http://tv./

> > >

> > >

> >

>

[Guest guest]

Lenny, I'd stand under an unbrella with you through any storm---A-Champ too. With anyone else, I fear I'd drown. Maurineschaferatsprynet <schafer@...> wrote: RE: Re:Autism Speaks' Clarification Statement re: Wall StreetJournalBob,I didn't get a chance to answer you before.I was not referring specifically to your message when I posted. Sorryif I confused you. I was not referring specifically to anyone on this list

about gettingmy name wrong, I was making the point that members of the list werespeculating about Barry's integrity without any facts to supportthat opinion. That meant that I could be next. Or you could be next.Any one of us could be next. I don't like that feeling. Has anyoneinvestigated who the top donor to the Schaefer News Report is andwhether Lenny might be influenced by that donor? -----------------------------------OK, I confess my influences. The biggest financial donor to theSchafer Autism Report has been my son Izak. For ten years, hisdisabilities "pension" funded the daily production of the newsletter.He paid for the computer, the internet connection, the replacementmice and back-up disks. The next largest money contributor far andaway is Bernie Rimland and the Autism Research Institute. Do thesecontributions influence my politics? You bethca! . . .down to my lastdrop of

sweat and blood. I have also contributed about 20,000 hoursof my own unpaid time putting the newsletter together over the firstten years. But some people are never happy no matter how many push-upsyou do for the cause. Luckily, there are so many more who areappreciative and are not threatened by my personal style ofdirectness, including my transcendented autism spectrum sense of humor.Lenny S-c-h-a-f-e-r (wink)

Get your own web address. Have a HUGE year through Small Business.

[Guest guest]

Thank you, Maurine, for the vote of confidence.

Lenny

> RE: Re:Autism Speaks' Clarification Statement re:

Wall Street

> Journal

>

> Bob,

>

> I didn't get a chance to answer you before.

>

> I was not referring specifically to your message when I posted. Sorry

> if I confused you.

>

> I was not referring specifically to anyone on this list about getting

> my name wrong, I was making the point that members of the list were

> speculating about Barry's integrity without any facts to support

> that opinion. That meant that I could be next. Or you could be next.

> Any one of us could be next. I don't like that feeling. Has anyone

> investigated who the top donor to the Schaefer News Report is and

> whether Lenny might be influenced by that donor?

>

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

>

> OK, I confess my influences. The biggest financial donor to the

> Schafer Autism Report has been my son Izak. For ten years, his

> disabilities " pension " funded the daily production of the newsletter.

> He paid for the computer, the internet connection, the replacement

> mice and back-up disks. The next largest money contributor far and

> away is Bernie Rimland and the Autism Research Institute. Do these

> contributions influence my politics? You bethca! . . .down to my last

> drop of sweat and blood. I have also contributed about 20,000 hours

> of my own unpaid time putting the newsletter together over the first

> ten years. But some people are never happy no matter how many push-ups

> you do for the cause. Luckily, there are so many more who are

> appreciative and are not threatened by my personal style of

> directness, including my transcendented autism spectrum sense of humor.

>

> Lenny S-c-h-a-f-e-r (wink)

>

>

>

>

>

>

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

> Get your own web address.

> Have a HUGE year through Small Business.

>

[Guest guest]

I concur.

KS

>

> I join in wholehearted defense of KB.

[Guest guest]

But you will find yourself only preaching to the choir. Everyone who you really need to convince will be listening to AS. Appearance is fact in our world. They appear to be the organization to listen to because they have the perceived blessing of those who supported NAAR, CAN and Autism Coalition with them. As long as the autism community is divided this way, there will always be confusion and lack of credibility issues. You will just appear to be the ACT up people in the autism community. I am not saying this is true, I am telling you that our marketing strategy is affected by this divide. Right does not always make might. Unfortunately sometimes might makes right. ly, I hope I'm wrong since I have a pretty good idea of how hard it will be to get AS to open up to the cause. You saw the difficulty first hand at the NYS meeting. Just for giggles, why don't you ask Harvey W. whether there is any merit to what I am saying? ask him if legislators take into consideration who is speaking when they evaluate what is being said. ask him if Alison Singer's comments would be considered to be more credible than the mom and pop off the street.

I stated in my email that I was just making a point, I have no doubts about your sincerity and dedication to the cause and lack of financial conflicts. Nor do I doubt Lenny's devotion either.

Heidi

From: Krakow <rkrakow@...>Reply- EOHarm EOHarm CC: tlredwood@..., sbernard@...Subject: Re: Re:Autism Speaks' Clarification Statement re: Wall Street JournalDate: Sat, 10 Mar 2007 23:52:55 -0500>Heidi,>>As you know, I think highly of Barry and have said so.>>You can get more information about Lifespire at www.lifespire.org>>In response to your comment about one organization bringing everyone >under their umbrella, there are other umbrellas under which to >stand. I find it more effective to stand with those who share - or >at least respect - my experience about how my son got sick.>>Best,>>Bob>>>On Mar 10, 2007, at 10:07 AM, elevatordance wrote:>>Bob,>>I didn't get a chance to answer you before.>>I was not referring specifically to your message when I posted. >Sorry if I confused you. >>I was not referring specifically to anyone on this list about >getting my name wrong, I was making the point that members of the >list were speculating about Barry's integrity without any >facts to support that opinion. That meant that I could be next. >Or you could be next.  Any one of us could be next.  I don't >like that feeling. Has anyone investigated who the top donor to the >Schaefer News Report is and whether Lenny might be influenced by >that donor? Bob, I don't really understand what Lifespire does but >should I be looking into it to see if you have any financial >influences? Of course I don't believe any of that, I am just >trying to make a point. Any of us that know , know his >dedication to the cause and I was offended for him. is at AS >because the s liked him and liked his point of view. I don't >know why the s don't seem to be able to expand the focus of AS >to include the autism/mercury/vaccine connection but I won't >automatically assume that they are malicious. They have enough of >a say in what goes on to hire .  They should have enough >juice to say "we believe this has helped Christian, we want to >study it"   Clearly, there are forces more powerful than them at >work here. If it was the GE connection, that will soon be over and >we may see some more positive movement. Your email about Bernie >Marcus and all of those connections was good work and I need to >study it more. I am sad that JB has publicly stated that he is >done waiting for AS to change because that means there may be no >more hope of that happening. I am sad because that means we have a >huge battle ahead. We cannot allow AS to operate as the largest, >most well funded Autism organization if they will not look under >every stone to identify the cause of autism spectrum disorders. >Several listers have posted as if the other organizations can just >carry on the fight without AS. I disagree with that. AS must be >turned and I don't know how long it will take or exactly how we will >do that. >>I am not suggesting that we muzzle criticism but some of the posts >were pure speculation with no basis in any factual information. >Unless we maintain our credibility we only look like lunatic fringe >activists. Everyone who believes that the vaccine program has >damaged our children has outrage. The trick is to channel that >outrage to make our side stronger and not making us look like >idiots. This is a war but there are way too many generals trying >to fight the war on different fronts. Somehow, someway, everybody >has to come together in order to make any progress. We can't let >our outrage be used against each other. Only against the enemy. >And then used in a controlled, planned, strategic fashion. Putting >the accelarator all the way to the floor and driving your car at the >wall MAY get you thru the wall but it will more likely total your >car and get you severly injured. The more prudent thing to do is >to look for ways to get around the wall. >>As an example: At first I was pissed off that Alison Singer was >going to the IOM meeting. But I didn't willy nilly start >complaining about it without thinking it thru. Because there >are people on this list who are ONLY on this list to make us look >bad. Let me repeat that. There are lurkers on this list who are >sending our emails all over and trying to make us look like we are >stupid, uninformed and emotional parents. So then I thought that >maybe Mark and will be able to discuss things with her and >maybe even get her to be an ally. I know that may be Pollyanna of >me but the IOM meeting is going to happen with or without us so it >is better to support those who are going and suggest strategies that >could be used to benefit the cause. >>Here is my latest idea: I think that there should be some sort of >official request in writing from SAFE MINDS, NAA, MAM, No-Mercury, >AChamp, etc, and let Mark or meet with Alison and >the request says that we want AS to hold a big >conference/meeting with all of the organizations who signed the >public statement to convene and present their mission and goals and >why they are not satisfied with AS. AS wants to bring everyone >under their umbrella so they should be interested in doing this.>>I don't have the answers. yet. I'm just asking everyone to think >about what they post an extra 10 seconds before they hit send.>>thanks,>Heidi>> >>From:  Krakow <rkrakow@...>>>Reply-To:  EOHarm >>To:  eoharm >>Subject:  Re:Autism Speaks' Clarification Statement re: >>Wall Street Journal>>Date:  Sun, 04 Mar 2007 22:32:40 -0500>> >Heidi (I have never called you "", are you referring >>to>> >me???),>> >>> >Since your message was posted in response to my message, I would>> >point out that it does not appear responsive to the points I have>> >made in my message, or others I have made in this thread. I am,>> >therefore, puzzled by your message. Are you directing your >>comments>> >to me or my messages? If so, I suggest your comments are >>misplaced.>> >If directed to others, I cannot comment, but I sure would >>appreciate>> >a clarification as to whether your message is responsive to mine.>> >>> >My comments have nothing to do with "liking" Autism Speaks or a>> >particular person associated with Autism Speaks. In fact, I don't>> >think my messages have ever discussed a particular person, at >>least>> >not by name.  My points focus not on "like" or "dislike" but>> >articulate disagreement  with the organization's publicly >>stated>> >positions. I believe the best way to "analytically figure out how >>to>> >motivate AS to be more receptive to including heavy metals on >>their>> >research radar screen" and to support positions that reflect our>> >children's  interests, is to make clear what the AS positions >>are>> >and to criticize them where appropriate.  If they are a "force >>to>> >reckon with" would you then suggest we should muzzle criticism? >>How>> >is that reckoning with their positions?>> >>> >I also have no idea what you mean about "unemotional fact-based>> >communication," at least insofar as my messages are >>concerned.  I>> >don't see much "emotionalism" in my posts - just attempts at>> >reasoned statement of position and sound argument.  If you take >>my>> >statements as emotional rants, perhaps I have failed in>> >communicating to you my views. I am not speculating as to what>> >Autism Speaks meant or might have meant. I take their statements >>on>> >face value, and with respect to the recent discussion of >>genetics,>> >have tried to explain a counter-view of genetics. I fully agree >>that>> >Ed Yazbak stated it better! which is why I was happy to post his>> >message about genetics.>> >>> >The purpose of this list, as I see it, is to discuss public>> >positions that affect our kids. I would say that challenge of>> >statements on genetics, and raising questions about misleading>> >promotion of scientific studies claiming autism has a genetic>> >etiology, are appropriate issues to raise on this list.  I am >>not>> >worried about "lurkers" reading these messages. This is an open>> >discussion and here, at least, the First Amendment to the U.S.>> >Constitution flourishes.>> >>> >What do  you mean about "being creative." It may be >>presumptuous of>> >you to suggest that if someone initiates a discussion criticizing >>an>> >organization's position on genetics that somehow this means that>> >this statement is the only thing being done by that individual to>> >advance a counter-view.  Is that what you are suggesting?  I >>shall>> >assume your comment on this and the others were not directed to >>me.>> >Perhaps you can clarify that.  This is a list for expression of>> >views. What would you have discussed here?>> >>> >By the way, since you posted your comments in response to mine, I>> >would like to make as clear as possible that I have never >>questioned>> >the integrity of Barry, publicly or privately. If you read >>my>> >posts I have stated nothing but praise for Barry and his>> >efforts,and have said so in response to questions by others.>> >>> >If your message is directed to someone else please so indicate>> >because I am, indeed, puzzled that you submitted your message in>> >response to mine.>> >>> >Bob Krakow>> >>> >On Mar 4, 2007, at 7:51 PM, elevatordance wrote:>> >>> >I get it. You guys don't like Autism Speaks. I am sure they >>are>> >well aware of your opinions as they and other lurkers who >>support>> >them are on this list.  No matter what you think of AS, they are >>a>> >force to be reckoned with. I support Dr Yazbak's effort to send>> >unemotional fact based communication directly to Autism Speaks. >>I>> >respect everyone's right to post their opinion but we are getting>> >off track here. A more productive use of time would be to>> >analytically figure out how to motivate AS to be more receptive >>to>> >including heavy metals in their research radar screen. Just >>telling>> >them isn't enough. We need to get more creative here. >> >>> >If I were the moderator of this list, I would remind the list of >>the>> >purpose of the list and would recommend some restraint in>> >speculation in what Alison Singer meant or didn't mean or might >>have>> >meant or what Autism Speaks might do or might not do or might >>never>> >do. >> >>> >And I would ask the list not to publicly question the integrity >>of>> > Barry who has demonstrated and continues to demonstrate and>> >will no doubt demonstrate in the future his dedication to the>> >"autism is mercury poisoning" cause. And in case I'm next, just >>a>> >reminder that my last name is , not , so please spell >>it>> >right when you question my integrity as well. >> >>> >Heidi>> >>> > >> >>> >>> >>> > >> >>From:  Krakow <rkrakow@...>>> >>Reply-To:  EOHarm >> >>To:  EOHarm >> >>Subject:  Re: Re:Autism Speaks' Clarification >>Statement>> >>re: Wall Street Journal>> >>Date:  Sun, 04 Mar 2007 17:38:52 -0500>> >> >As far as I know the "clarification" is not yet published in >>WSJ>> >>->> >> >don't know whether it was submitted. But as Lenny Schafer >>pointed>> >> >out it appears that AS continues to place undue emphasis on>> >> >genetics, and for reasons that I point out and Ed Yazbak >>stated>> >>much>> >> >more effectively, AS's public relations statements on this >>issue>> >>of>> >> >genetics, as well as the conclusions of its funded studies, >>are>> >> >wrong and unsupported by prevailing scientific data. One >>wonders>> >>why>> >> >they continue to beat the genetics drum. How does that serve >>the>> >> >interests of our children?>> >> >>> >> >RJK>> >> >On Mar 4, 2007, at 5:25 PM, Dad Fourkids wrote:>> >> >>> >> >So did Singer get her retraction published in the WSJ?>> >> >  Or did Autism Speaks allow (or encourage?) the>> >> >  misquote in the high-profile WSJ (which is read by>> >> >  nearly all the bigshots, movers and shakers in the US)>> >> >  and publish their clarification only on a few obscure>> >> >  websites where only those of us driven by the charade>> >> >  would bother to see it?>> >> >>> >> >  Autism Speaks' Clarification Statement re: Wall Street>> >> >  Journal>> >> >  Posted by: "schaferatsprynet" schafer@...>> >> >  schaferatsprynet>> >> >  Fri Mar 2, 2007 7:23 pm (PST)>> >> >  Autism Speaks' Clarification Statement re: Wall Street>> >> >  Journal>> >> >>> >> >http://www.autismsp eaks.org/ wsj_statement. php>> >> >>> >> >  __________________________________________________________>> >> >  TV dinner still cooling?>> >> >  Check out "Tonight's Picks" on TV.>> >> >http://tv./>> >> >>> >> >>> >>> >>>

[Guest guest]

YOU kicked ass in this letter to autism speaks. And I stand by your words with my severely autistic son with horrible GI problems... Kudos we should rename them Autism speaks for CDC, and Big pharma, Joe ------------------- TXRobin@... wrote: robin nemeth wrote:Date: Sat, 3 Mar 2007 17:33:44 -0800 (PST)From: robin nemeth Subject: Wall Street Journal quote and clarificationasinger@...You’ve clarified your statement to the Wall Street Journal, on theAutism Speaks website. This, however, is insufficient. You had anopportunity to reach hundreds of thousands of people. You used thatopportunity to help those whose agenda is to profit from the poisoningof our children. How many people do you think will read theclarification of your statement that is on the Autism Speaks website? Do you think that parents of autistic children are going to be lessoffended by being told that they have simply passed on bad genes thanthey were at being told that they are at fault for their child’s autismbecause they let their child watch too much television, or because theyare

cold, refrigerator parents? Do you have any notion at all of howoffensive I, as a person who once considered myself a person withAspergers but now considers myself a person who has been mercurypoisoned by my government, finds your ridiculous statement to the WallStreet Journal? If I had been interviewed for a story in the Wall Street Journal, and Imisspoke, and I left the impression that the only cause of autism isbad genes, or if I’d been misquoted, or had my words taken out ofcontext, I would be doing everything within my power to make sure thatthis was corrected. To make sure that my real intentions, my realmeanings, were properly conveyed. Publicly. Through the main streammedia and the press. Not on some website that far fewer people (andpeople who are for the most part already largely informed regardingthis issue, anyway), might happen upon.Will I be seeing a statement from you any time soon on the

television,or the radio, or quoted in the press, in which you state your beliefthat environmental triggers should be looked into as a cause of autism?Could I dare to hope that you might want to raise awareness aboutmercury, or possibly even the horrible ‘t’ word – thimerosal?Do you believe that mercury could contribute to developmental andneurological disorders? Are you aware that there are a huge number ofparents and scientists who do? Or am I to believe that you’ve neverheard of the word ‘thimerosal’? Why do you continue to so adamantlyinsist on ignoring the big huge stinking gorilla that is sitting rightin the middle of the parlor? If you have heard of the theory butbelieve it to be a crackpot theory, even a crackpot theory warrants amention, once in a blue moon. Unless it is a theory that you wouldprefer would just go away. Unless it is a theory that you, like thepharmaceutical makers, are afraid of. I

understand that you have a child with autism. I will not pretend tounderstand what it must be like to have a child with autism. I willtell you that I understand what it is like to be afraid of having achild with autism. To be told that your child might have autism. Towatch a child unable to interact with her peers. And although I am notdiagnosed with Aspergers, I understand what it is like to have it.How can you look at yourself in the mirror, knowing that you are helpingthe people who’ve caused your child to be the way he or she is? Nobodycan be inside another person’s head, but I will tell you that it isn’teasy being mercury poisoned. It hasn’t been easy for me, and it isn’teasy for my children, and we have only the most minor of symptoms.Imagine what it must be like to have severe problems? Imagine what itmust be like to have severe gastro intestinal pain? To be unable tointeract with the people around you. I know

you probably have donethis, tried to imagine this. How can you live with yourself knowing that you are helping the peoplewho’ve done this to your child? Do you tell yourself that the skull and crossbones on the Thimerosalbottle means nothing? That it’s the concentration that makes a poison,and it’s not high enough in vaccines to cause harm, even thoughaccording to the material safety data sheet concentrations like theones in vaccines are too high to be flushed down your toilet? Do youignore the fact that there were no safety studies on Thimerosal priorto it’s use in vaccines? Do you ignore the thousands of papers whichdiscuss the toxicity of Thimerosal? The graphs which show an increasein autism with an increase in thimerosal exposure? You and the vastmajority of the people and the dollars in your organization ignore allof these things in order to concentrate on a search for the genes thatmake a few people

slightly more prone to the affects of a neurotoxinthan other people. What you and the government officials and thescientists who are focusing their efforts on genetics are doing is akinto blaming the people in Auschwitz for their own deaths. Because theyhad the bad misfortune of having particularly bad genes. It must justbe that those jewish genes are particularly susceptible to the affectsof nerve gas. Oh well, too bad for the jews. You ignore the efforts of the manufacturers to buy up the media; thatmost of the commercials on my nightly news on any station I watch inthe evening are sponsored by the same companies who appear to now besponsoring you and your organization. You ignore the efforts ofmanufacturers to buy indemnity from Congress, for the harm theirproducts cause. You ignore the fact that the unvaccinated childrenwith autism or asthma are almost nonexistent. You ignore all of theconflicts of interest.

With two clicks of my mouse I can show that thesafety study of Thimerosal that was paid for by the CDC was conductedby the very same people in Denmark who’ve profited from the selling ofThimerosal containing vaccines in the US . You ignore the fact thatdata has been kept from the public, in violation of the freedom ofinformation act, or else lost. You ignore the fact that the CDC hassaid mercury should be removed from vaccines, but then has done nothingto enforce that this occurs, but rather backpedals, now, in an effort toprotect it’s clients in the drug industry.I can’t fathom any of this, but what I really can’t fathom is how youmanage to ignore the fact that you are helping the people who’vedestroyed your child. I don’t believe that people go to hell when they die, for the sins thatthey’ve committed. I believe that they create their own hell here onearth, for the sins that they’ve committed. The hell

you’ve createdmust be a horrible one indeed. It is only too bad that your child mustlive in it with you. Robin Nemeth*****robin nemeth wrote:Date: Mon, 5 Mar 2007 09:00:50 -0800 (PST)From: robin nemeth Subject: Alison Singer's Wall Street Journal statementkevin.barry.gr@...I understand that you’ve resigned from your position with GenerationRescue in order to work for Autism Speaks, and avoid any apparentconflicts of interest. When you were with Generation Rescue, I assumed that that meant that youbelieved that autism was mercury poisoning and caused in large part bythimerosal in vaccines. Am I to believe that you still believe this tobe the case? Certainly Alison Singer’s statement to the Wall Street Journal isinconsistent with the beliefs espoused by Generation Rescue. But she isnot speaking for you, she is

only speaking for herself and theorganization that she works for. Will you continue to consult for Autism Speaks if these are the sorts ofstatements that they continue to make prominent with the public?I don’t understand what exactly it is that you are getting paid fordoing, as a consultant for Autism Speaks. Some have suggested that youwill be trying to turn around the organization’s tendency to aid andabet the pharmaceutical manufacturers and government officials who havepoisoned hundreds of thousands of children. Is this the case? When mightI expect that the public will see some positive results regardingthis--some clear statements about the role of thimerosal, widelydisseminated via television or radio or the press (as widely as wasAlison’s ridiculous statement to the Wall Street Journal), from AutismSpeaks?Robin Nemeth