All meetings at the Vineyard:

	June 19, 2004:	Dr Jerry Kartzinel: The latest in Biomedical Intervention for Autism Spectrum Disorders ($25 fee and reservations required)
	July 10, 2004:	Neurology & Autism: The latest findings in neurology and why genetics play an important role Sara Spence M.D., Ph.D. – UCLA Pediatric Neurology Director Note: FREE! Back to normal TACA schedule!
	August 14, 2004:	Speaker being confirmed
	September 11, 2004:	Speaker being confirmed
	Much more is being planned for 2004! Stay tuned!

a) IDEA Re-authorization Passes the Senate

ONE PARENT’S VIEW:

Yes, it is bad news.
If you really want to get into the word for word details of the 2 bills compared to the current IDEA, this is a good document http://www.napas.org/publicpolicy/3%20way%20side%20by%20side%20final.pdf

Here are the high points of the house bill:
* Only partially fund the IDEA, instead of funding it in full, as Congress had promised. Not only will there not be enough money for disabled kids, but school districts will be allowed to divert the IDEA money they get to other projects, taking the money that is intended for disabled kids who don't get enough as is.

* Eliminate short-term benchmarks and objectives in IEPs after 2003-04 except for the most disabled children, thus making schools less accountable, not more.

* Eliminate discipline protections in the IDEA, so that a child could be expelled or put in an alternative setting for any conduct violation, no matter how minor, even if it was caused by the disability, and even if the child doesn't understand what he did wrong. Diabetic children could be expelled for eating in class; ADHD/autistic children for shouting out, being unable to sit in their seat or raise their hand. This provision could be used by teachers who dislike disabled children to remove them from mainstreamed settings.

* Eliminate important procedural protections that put parents and school districts on an even playing field, and alters due process so that parents are at a severe disadvantage. This part of the bill has been described as completely one-sided.

* Eliminate requirements that speech, occupational, PT and other therapists be "highly qualified," so schools could use personnel to provide therapy with only temporary, emergency, or provisional certification, and no practical experience or graduate degree. This will create a two-tiered system, where children in public schools could get vastly inferior therapy and related services.

* Let schools do 3 year IEPs and eliminate triennials, unless parents specifically request otherwise.

* Allow state officials to set the attorneys' fees for parents as low as they want to deter attorneys from taking IDEA cases and enforcing the law--while school districts can spend as much money on their attorneys as they want.

* Allow the Secretary of Education to let 10 states lift paperwork requirements for 4 years, but doesn't spell out any limits on this authority or what it means. Does it include IEPs? Discipline notices? Notices of Rights?

* Would likely result in children getting fewer services. Let Congress know what your child needs and what your child gets now and why its important to have the protections of the IDEA

* Would attempt to artificially limit the number of students who are receive services for being emotionally or learning disabled (from www.geocities.com/protectidea/highlights.html)

PLEASE READ MORE OPINIONS HERE: www.OurChildrenLeftBehind.com

Thanks to Lisa R, Kyle's mom, for her thoughts

b) UPDATE On the STATE BUDGET CRISIS

CA DISABILITY COMMUNITY ACTION NETWORK
CAPITOL NEWS REPORT - ISSUE #91-2004

Linking people to disability rights Website now up: www.cdcan.org
May 18, 2004 -   Tuesday evening

SENATE PRESIDENT JOHN BURTON SAYS GOVERNOR'S BUDGET CUTS TO SERVICES FOR PEOPLE WITH DISABILITIES, SENIORS AND THE POOR "UNWORTHY OF CALIFORNIA" -  PROMISES FIGHT

SACRAMENTO -  Senate President Pro Tem John Burton (D-San Francisco, 3rd District), the single most powerful member of the California Legislature, called Governor Schwarzenegger's proposed budget cuts to people with disabilities, the Blind, seniors and those impacting low income people as "absolutely unworthy of a great state, unworthy of a governor who does have compassionate - and concern for those less fortunate then he is" adding that ".. I am only one of 120 members of the State Legislature, but, my mother didn't bring me into this world to pick on poor people in order to solve problems that were not created by them" in a press conference held last Thursday (May 13) in the State Capitol.   [Note release of this CDCAN report was delayed due to operator error - I forgot to press "send"]
Burton, who, due to term limits will be forced out of the Legislature at the end of this year said, in response to a question if he was "happy" about some of the cuts that the Governor rescinded to health and human services, that "You know, it's nice that he [the Governor] didn't do what he shouldn't  have been done before.  I mean you're not going to get a lot of props from me for doing that. I mean I'd like to congratulate people for not robbing that banks and not running over people in the cross walks too".
Burton said he would be rather have a budget three weeks late if that meant protecting critical services for people with disabilities, seniors and low-income people, in response to a question about the importance of passing an on-time budget this year.
"If the budget is going to be three weeks late, and we're going to protect the most vulnerable in society, the world will little note nor long remember that three weeks.  I would remember for the rest of my life seeing old people going into the store that don't have pets and buying cat food instead of tuna fish.  So, on time budgets are very helpful - in the press. They mean nothing in the outside world. " said Burton.
Burton's press conference last week was in response to Governor Arnold Schwarzenegger's earlier press event at the Secretary of State Office Building Auditorium, where he unveiled his May revised budget proposal.  Advocates for children and adults with developmental and other disabilities and seniors are waging an all-out campaign to defeat the Governor's proposals regarding a proposed rollback in In-Home Supportive Services wages and benefits; pushing forward legislative budget language and emergency regulations that would put in place statewide standards that would limit regional center funded community-based services; cuts to SSI/SSP, proposal to impose a parental/family share of cost for children with developmental disabilities ages 3-17 receiving regional center services and more.
* Burton refused to come out for a tax increase at this point - though felt the rollback of the vehicle license fee will unfairly hurt people with disabilities, seniors and low-income families due to loss of critical funding for services.
* Senate Democrats met privately yesterday and today in part to discuss critical budget issues.
* The Governor's revised budget proposal needs approval of both the Senate and Assembly by 2/3rds vote, a total that requires votes from both parties.

SUMMARY OF KEY COMMENTS MADE BY SEN. BURTON AT 5/13 PRESS CONFERENCE
Sen. Burton:  "This budget is not worthy of the State of California.  The Administration claim that they want to maintain critical support for California's most vulnerable citizens - those who are risk - and want to recognize children as a priority.  Yet we take about a half a billion dollars away from the poorest children in the state, those whose parents are in the CalWORKS programs. Those kids whose parents or parent in most cases are following the federal law, following rather ignoble welfare reform put in place by President Clinton and in this state, see the money taken away from them that they so desperately need. In addition to this, not just taking away cost of living increases, reducing the grant money - which is low, but in addition to that, when the parents do go to work - when they get a job, and they go to work, but we still, because they are still at such a low level, trying to protect the children we limit those grants.  These people, when they go to work, have to pay for child care. They have to do certain other things that they are trying to accomplish to get out of the welfare morass into a productive role as taxpayers and contributors in society, and we make that more difficult.  CalWORKS is not what caused the budget problem. The people are doing what we asked them to do - not what we asked, but demanded that they do in the program. And they shouldn't be harmed by a budget problem that is no fault of their own."

Sen. Burton: "Then we take 1.2 million elderly, blind and disabled in the state - almost all of whom cannot work to make up any grant reductions.  And we don't want to give them not only any state COLA, [cost of living adjustment]  but we want to steal the money that the federal government gives them through the federal COLA  pass through.  This portion of the budget is absolutely unworthy of a great state, unworthy of a governor who does have compassionate - and concern for those less fortunate then he is...and those who are less fortunate than others. These are things that we are going to look very hard at, and in my opinion, I am only one of 120 members of the State Legislature, but, my mother didn't bring me into this world to pick on poor people in order to solve problems that were not created by them.  There are other parts of the budget that are basically are outside agreements.  Some of you people in the press don't fully understand the legislative process. But in  reading the paper you seem to think that if the Governor and an outside group make a deal, then all of a sudden then that's a deal, and  the Legislature's been by-passed. Well, as I've said downstairs [Senate Floor] time and time again, you can't go to the initiative ballot to get budget through. We can't be by-passed.  We are the ones that deal with the budget. The Governor proposes a budget. We dispose of a  budget. We are the ones to take the budget, work our will, up,  down or sideways - and send it back to the Governor, where the Governor can  then deal through  his veto power with a blue pencil, to reduce the amount of funding basically that he is legally entitled to do.  So I view all of the deals that have been cut as a suggestion from the Governor  in the  budget, just like the suggestions would have been made without these deals. The only thing that they do, is if the Legislature did decide to do something about K-12 education and followed the Governor's cuts in that or deferrals in that, that it is clear that the teachers organizations are not going to argue about that. So I mean it kind of gives one a pass there. On the higher ed stuff, I think here is great concern in our caucus about that.  And as I have said, there is a deal between the Governor, and I guess the presidents and I guess, the regents and the trustees.  And the only ones that really has concerns about this are probably the students, faculty and parents of the students, which probably total  more than you know, the trustees and the regents of the universities.  We have a concern about that. We do understand exactly why these deals were made. Don't necessarily agree with them from the standpoint of the university system and the state university system making them.  It is absolutely clear in my judgment, that unless the State hits the lottery or maybe goes into partnership with the [Indian] Tribes and some of the casinos, to get a lot more revenue in, that we're not going to be solving the State's fiscal problems.  We are delaying them, and sometimes by delaying a problem, you get to solve it later in an easier fashion. And sometimes delaying a problem it gets worse. Political decisions  if you put them off long enough, you find out most them take care of themselves. Unfortunately that's not necessarily true with fiscal problems, but we'll just have to see. I do look forward working with the Governor to try to deal how we're going to rectify our differences of opinions on this fiscal approach.  But sooner or later we are going to have to deal with the structural change.  I don't think anybody of any great intellect believes you can cut your way out of a structural problem...."

Question:  "Will you or your [Democratic Senate] caucus push for a tax increase?
Sen. Burton: "Why would one push further - I don't really know  what I'm going to do on that.  I mean, I want to do this, and he isn't going to do it, so he's standing up there doing nothing. We're just going have to see what balances what and what the great need is.  I'll tell you, you know  the amount of money that was given back to the VLF [Vehicle License Fee] was four times plus what this budget takes away from the poorest people in our State. And we wouldn't be in the toilet we're in today but for that. I understand, I  told the Governor today, I understand, you know, what he said in the campaign he was going to do it. As a person if he says he's going to do it and he's going to do it and he did it. But that $4 billion plus, much which went to people who didn't need the money because the bulk of it went to people with expensive cars, and you don't necessarily see a lot of poor people with expensive cars.  What are we doing?  We're screwing the poorest of the poor to pay for a tax break much of which went to the wealthy.  It goes against my sense of fairness if you well - as skewed as it might be."
Question: "There has been a lot of talk about an on time budget and " [interrupted by Burton]
Sen. Burton: "Oh yes, very important [sarcastically] We had three in the past twenty years. Yes, vital" [laughter]
Question:  "Will you take a lot at what's best for the state in terms of pushing for a better budget if its necessary to pass a deadline. How do you weigh getting an on time budget against..." [interrupted by Burton]
Sen. Burton:  "Screwing poor people, taking food out of the mouths of kids, elderly, blind and the disabled? Not much. If the budget is going to be three weeks late, and we're going to protect the most vulnerable in society, the world will little note nor long remember that three weeks.  I would remember for the rest of my life seeing old people going into the store that don't have pets and buying cat food instead of tuna fish.  So, on time budgets are very helpful - in the press. They mean nothing in the outside world. In the press it looks good, because, if you go down the street [people say] the budgets late - aren't they always late? We've had, since I've been in Sacramento, I think two really on time budgets. And that's when we had surpluses.  When you're in the shorts, it  takes more time to do it. I would hope we would have a budget that is on time.  Let me tell you, the money markets and the bond markets are going to look at whether or not its a sound budget. They would rather see, in my judgment, a sound fiscal plan that was five days late, then an unsound one that was ten days early, I would think."
Question: "Senator, are you at all relieved or happy to see the restoration of that he [the Governor]  put in from January, especially around Healthy Families and Medi-Cal?"
Sen. Burton: "They should have never been taken out. Why should I be happy about something that got fixed that never should have been broken?
Sen. Burton: Healthy Families is good. People make money out of Healthy Families,  not a lot - the health providers and everybody. Nobody is making money off of some kid of a mother whose husband has either left her or died, or even could have died in the gulf war and hat person is in the CalWORKS program, nobody is making off of that kid, except maybe the corner grocery store, you know, if their grant is not cut.  Nobody is making money out of elderly, blind, or disabled person who gets their full grant, except maybe the tuna fish people versus the cat food people. You know, it's nice that he [the Governor] didn't do what he shouldn't  have been done before.  I mean you're not going to get a lot of props from me for doing that. I mean I'd like to congratulate people for not robbing that banks and not running over people in the cross walks too".
Question: "The restoration of the health and human services do you think there is still too many cuts in the budget?"
Sen. Burton: "Well, Anybody with any brains would think so. I don't think that is a novel thing. When you knock $500 million out of the pockets of the poorest people of the state or more than that, counting the elderly, blind and disabled, about $700 million, yeah, I mean, whether there are cuts in that. To have the poorest of the poor pay what  basically was a tax cut for most of which went to wealthy people with very expensive cars, seems to be alittle bit weird. Doesn't send the right message about California or America. Doesn't say much about our values."

FOR MORE INFORMATION ABOUT CA DISABILITY COMMUNITY ACTION NETWORK
*  PLEASE! HELP NEEDED URGENTLY!  Contributions Needed to Continue Effort-Thanks Again!
As  of  5/18/04, many many, thanks again,  to the friends, people with disabilities and their families, community organizations and others who have sent in generous and needed contributions and donations.  As mentioned before, individual thank you letters are now being sent out (due to workload have been delayed!). However, until grant funding is finalized, contributions from people and organizations is still very urgently needed to keep the advocacy efforts going for the next several months. Please make check or money order  to:  California Disability Community Action Network  (or abbreviate CDCAN). CDCAN is not yet a non-profit organization (work on this will have this happen in within the next few months) Send contributions to: California Disability Community Action Network,  1225 8th Street Suite #480, Sacramento, CA  95814.  A method to contribute by credit card (through Paypal) is NOW set up on our website, at www.cdcan.org.
* Who Is CDCAN?
The California Disability Community Action Network is a non-partisan link to thousands of Californians with developmental and other disabilities, their families, community organizations and providers, direct care and other workers, and other advocates. These action alerts and news reports is for all of them. In addition it also goes to news organizations, state and local government officials and staff.
* How To Receive CDCAN Capitol News Reports and Alerts
If you would like to get on this distribution (and conversely, get off of it) please send an email with that  request to:  martyomoto@rcip.com OR sign up via the CDCAN website at www.cdcan.org.  Sharing information is part of our organizing effort. Please feel free to forward or copy  this (attribution is nice). We're all in this together!
* How To Contact CDCAN
Marty Omoto, director/organizer  -  California Disability Community Action Network
1225 8th Street Suite 480 Sacramento, CA 95814   VOICE PHONE: 916/446-0013
FAX number: 916/446-0026        email: martyomoto@rcip.com
INFO HOTLINE TOLL FREE NUMBER: 1-877-260-0267 (cannot leave messages)
SAME INFO HOTLINE FOR SACRAMENTO AREA:  486-4652                  WEBSITE: www.cdcan.org

c) DAN! (Defeat Autism Now!) Washington DC Recap – By Dr. McCandless

POST-D.C. DAN! UPDATE, 4-27-04: I have finally recovered enough from recent events (flash flood encounter in HI) to make an attempt to discuss some of the issues that came up for me at the most recent and most incredible DAN! conference, including some info from the Think Tank that you have been discussing on the lists.

Genomic Testing: Researchers are very excited by this, and it will definitely be more helpful as more is learned by this process. However, there is inadequate evidence that we can as yet get any help with subtyping or treating autism with finding out SNPs (single nucleotide polymorphisms), so most of us clinical types (as opposed to the researcher types) still view genomic testing as research. However, if a parent insists on knowing any as yet known genetic bases for the problems and can accept an incomplete picture, it does no harm (except $$ which might be used for more directly helpful tests) to get this. The problem is, there are so many genomic variants out there that the incomplete SNP findings could be very deceiving as to appropriate therapy. To quote Dr. Pangborn: “Suppose both MTHFR SNPs are off, indicating that 5-meTHF (“Folapro”) is needed. But suppose that one or more other things is also wrong: methionine synthase reductase weakness, Hg stalling Met synthase, no Me-Cbl because glutathionylCbl is deficient, etc. In such cases, 5-meTHF can' t be used because it has no place to go. (GSCbl or MeCbl might help.)”

In other words, to have the complete picture that might guide appropriate therapy, we would need both MTHFRs, both GSH-S-transferases that Dr. Jill James has found as problems, betaine-Hcy methyltransferase, probably methionine synthase reductase, definitely COMT, and for a few, the creatine transporter. And there may be some more common genomic variants out there. There is still a lot unknown but more information is coming in every day both from clinicians and researchers to help us with our complex little teachers. However, the stampede by some of you to get the genomic testing may not answer as many questions as you hoped for, and probably should be done when suggested by your doctor who knows how to best interpret it for you and may have a reason because of your child' s clinical picture to get this particular testing.

Creatine: The $64,000 question is: Does creatine cross the blood-brain barrier? Dr. Dick Deth and Dr. John Green are working on this along with many others, and when the creatine transporter system is defective, creatine transport by passive diffusion is slow and requires a big concentration gradient. This means very large doses, how large, we don' t know yet and it is being studied. Too much creatine if there is any hidden kidney problems is not good, and kids should be given a lot of water to drink when taking this nutrient. Doses to be effective may cause stomach distress. Also, if mercury is still in the brain, phosphorylation of the creatine is impaired, and no matter how much you give it will probably not be helpful as the deficiency is the phosphocreatine. This would imply that creatine would probably be more effective after chelation has been completed showing very little mercury output, but this is a conjecture and still needs to be studied. In other words, though we know creatine may be deficient in many of our kids' brains, the use of oral creatine has many issues that have not as yet been elucidated. I' ll keep you posted as I find out more, and Tyrus is looking into a way to try to get this in by some other than the oral route so it might get to the brain more efficiently.

Methylcobalamin: We have learned about even more benefits of the methylcobalamin than we knew at the last conference, and the evidence is that 90% of our kids benefit to some extent, some remarkably so, with injectable M-B12, and many of them without other treatments per Dr. Neubrander' s experiment of giving it to children immediately when they first come see him and during awaiting the results of the other routine testing. I believe every child deserves an adequate trial of this treatment, and evidence so far is that other ways of getting it may be somewhat beneficial for a few kids, but the difference in the kids getting the injections is impressive.

Methionine: I have been hearing of some bad reactions to large dose methionine, and asked Jon Pangborn about it. He feels that methionine in large doses is not a good idea for this reason: Methionine' s metabolism gets stuck at SAM, and some then goes to methionine sulfoxide until the SAH-Hcy-Met synthase log jam is opened up (possibly by methylcobalamin). Methylation cannot be pushed by methionine when S-adenosylhomocysteine is elevated. SAM can' t push it either; not until SAH is normalized. And after SAH is normalized, more recycle of Hcy to Met and more Met should occur, making large doses of Met unnecessary. Methionine acts as a reducing agent, but bottom line is: there are lots of safer antioxidants like vitamin C and GSH.
I would suggest this not be used unless your doc recommends and supervises it.

Further notes from Dr. Deth re high dose methionine: “There are overlaps between methylation problems in schizophrenia and methylation problems in autism. One of the most robust observations (replicated in ten different studies) is that the administration of high doses of methionine can elicit acute psychotic reactions in schizophrenics, while having no such effect in normal individuals. Increasing methionine levels above normal would impair dopamine-stimulated phospholipids methylation, since the D4 receptor and methionine both compete for MAT activity.”On this same topic, Teresa Binstock writes: “The fact that gastro/nutritional pathologies might alter these (methionine) pathways is exciting. The possibility that, by altering fetal nutrient profiles, placental irregularities might alter these pathways is exciting. But willy nilly rushing forth to therapize a specific child by manipulating these interrelated pathways seems fraught with risk for at least a small subgroup. Manipulations at the level of histones and epigenetics ought be highly respected because such manipulations are altering a fundamental element within mammalian life (the histone and epigenetic modification). Another notation by Dr. Shaw offering another reason for possible toxicity: Methionine can be converted by abnormal gut flora to methanethiol, one of the most toxic gases there is. Methanethiol has been implicated as a significant factor in hepatic coma. The toxic effect of methanethiol is amplified in the presence of elevated ammonia which has also been reported in autism by Drs. Boris and Bradstreet.

Some notes from Teresa's search on this topic: A very recent article in Am J Med Genet, 2004 May, 15;127B(1):51-9, Methylomics in psychiatry: Modulation of gene-environment interactions may be through DNA methylation, by Abdolmaleky, HM et al from Dept. of Psychiatry, Harvard Med Sch at Mass Metal Health Center, Boston, MA.

Some selected notes from the abstract: Fine-tuning of neuronal connections during development is regulated through environmental interactions. Some fine-tuning occurs through changes in gene expression and/or epigenetic gene-specific DNA methylation states. Known epigenetic mechanisms include RNA inhibition, RNA modification, and DNA rearrangement. Exposure memory expressed as epigenetic DNA modifications allows genomic plasticity and short-term adaptation of each generation to their environment. Environmental factors that affect DNA methylation include diet, proteins, drugs, and hormones. Induced methylation changes may produce altered gene response upon subsequent hormonal stimulation. The gene-specific DNA methylation state may be preserved upon transmission through mitosis and meiosis. An increasing amount of data implicates a role for DNA methylation in multi-factorial psychiatric disorders. For example, 1-methionine treatment can exacerbate psychosis, while valproate, a drug producing hypomethylated DNA, reduces such symptoms. Authors state that more studies are needed to define the role of methylomics and other epigenetic phenomena in the nervous system.

Best wishes to all! Dr. JM

Editor's note: Thank you, Dr. McCandless, for the RECAP! If you are in LA and want to hear more – check out the October conference info at www.danconference.com

d) Sad news – Dr. Warner Passes

F. Jack Warner M.D.
Warner, F. Jack, M.D. A Fullerton pediatrician for 40 years, passed away peacefully on March 7 from heart failure. Dr. Warner, 75, is survived by three sons, Rick, David and Steven, his mother, Winifred Warner, 99, his sister, Joanna Stark, his brothers, Michael Bob. He is also survived by his loving companion, Beverly Summer. In addition to his many friends, families and patients locally, Dr. Warner will be remembered for his successful protocol for the treatment of children with Down syndrome begun 20 years ago, which will continue to be offered around the world. A memorial service will be held on Friday, March 12 at 11 a.m. at the St. Andrews Episcopal Church, 1231 E. Chapman Ave., Fullerton, CA 92831. If desired, memorial contributions may be made to The Warner House, #505, 31878 Del Obispo St., Ste. 118, San Juan Capistrano, CA 92675. Published in the Los Angeles Times on 3/11/2004.

a) YESTERDAY's IOM REPORT & COMMENTS:

IOM Report:
www.story.news.yahoo.com/news?tmpl=story&cid=594&ncid=594&e=5&u=/nm/20040518/hl_nm/health_autism_dc

Vaccine, Preservative Do Not Cause Autism – Panel

By Maggie Fox, Health and Science Correspondent

WASHINGTON (Reuters) - Neither the measles, mumps and rubella vaccine nor a mercury-based preservative used in many childhood shots cause autism, a U.S. health panel said on Tuesday.

Researchers and parents trying to find out what causes autism and its possible recent upsurge should look elsewhere for a culprit, the Institute of Medicine (news - web sites) panel said.

"The weight of that evidence is pretty substantial," said Dr. Marie McCormick, an expert in child and mother health at the Harvard School of Public Health who chaired the panel.

"The overwhelming evidence from several well-designed studies indicates that childhood vaccines are not associated with autism," she added. The same holds true for a mercury-based preservative called thimerosal which is often used in vaccines, the panel found.

Autism can affect a child's ability to learn, speak and socialize. No one is sure precisely how many children have autism, but some researchers say it could be as common as one in every 1,000 children.

Because autism is usually diagnosed about when children receive many recommended immunizations, some groups believe vaccines are to blame.

A few parents, especially in Britain, have begun to refuse to vaccinate their children and outbreaks of disease have been traced to unvaccinated children.

McCormick said the diseases that are prevented by vaccination were often fatal in the days when they were common childhood occurrences. "These diseases that we are talking about are very, very serious diseases and they are still present in the rest of the world so, they still are a plane ride away," she said.

SIFTING THROUGH THE EVIDENCE

The Institute's panel, which included experts in pediatrics, family medicine, statistics and epidemiology, had reported in 2001 that there was no proven link between vaccines and autism but said there was not quite enough evidence to be definitive.

Since then, they have reviewed five large epidemiological studies done in the United States, Britain, Denmark, and Sweden that found children who were vaccinated with thimerosal-containing vaccines were no more likely to have autism than children who got thimerosal-free vaccines.

They looked at studies that reported links between vaccines or thimerosal and autism, but found none of them could show a connection.

They searched for evidence of a biological explanation of how immunizations or thimerosal could cause autism, and found none. They listened to advocates and family members who believe vaccines caused autism, as well.
But some groups said the Institute's report was biased.

"This report went beyond any other report and this is why I felt it was political," Barbara Loe Fisher, who founded the National Vaccine Information Center, said in a telephone interview.

She said she would like to see research done by scientists with no connections to the "public health community."
Other groups also promised to continue to battle to prove that vaccines cause autism.

  "Another flawed report -- government issued or otherwise -- will not stop SafeMinds from continuing its mission to foster science and educate the public," said Sallie Barnard, executive director of SafeMinds, one of the groups.

McCormick stressed that the panel was independent of any vaccine maker or of the government and was not paid for its work. She said they considered the possibility that some of the studies were biased. "We do not feel that the data were manipulated," she said

Comments:
Weldon Calls IOM Conclusions Premature and Hastily Drawn
Rep. Dave Weldon, M.D. (FL) Issued The Following Statement

Today's report is premature, perhaps perilously reliant on epidemiology, based on preliminary incomplete information, and may ultimately be repudiated.  This report will not deter me from my commitment to seeing that this is fully investigated, nor will it put to rest the concerns of parents who believe their children were harmed by mercury-containing vaccines or the MMR vaccine.
 
Unfortunately, this report will lead many clinicians to believe that thimerosal is safe and there is no problem with the MMR; however, it will do nothing to allay the concerns of thousands of parents of autistic children.  It will only drag the IOM under the cloud of controversy that has currently engulfed CDC.  This concern is what lead me earlier this year to request that Dr. Julie Gerberding delay this meeting and report.
 
In 2001 the IOM stated that it is “unclear whether ethylmercury [from vaccines] passes readily through the blood-brain barrier…”  The IOM recommended several biological and clinical studies to answer this question and whether this mercury could cause developmental problems.  These studies were in large part never done.  Yet IOM chose to ignore the need for this research and instead has focused its analysis on the data available today, most of which is statistical, but there is much more research that needs to be done before it can definitively be said that thimerosal does not contribute to NDDs.  Even today, the IOM cannot tell you with any degree of certainty what happens to ethylmercury once injected into an infant.  Does it go to the brain?  Does is cause developmental problems?
 
The IOM' s scope of investigation was severely narrowed for this review.  In 2001 the IOM considered thimerosal' s relationship with nuerodevelopmental disorders as a whole, but here they only consider Autism.  This raises suspicions that this IOM exercise might be more about drawing pre-designed conclusions aimed at restoring public confidence in vaccines rather than conducting a complete and thorough inquiry into whether or not thimerosal might cause neurodevelopmental disorders.  Dr. Thomas Verstraeten, the author of one of the studies upon which the IOM relies, recently stated in an April 2004 letter to Pediatrics: “The bottom line is and has always been the same: an association between thimerosal and neurological outcomes could neither be confirmed nor refuted, and therefore, more study is required.”  It was after this study was published that the IOM scope was narrowed.
 
Unfortunately, the epidemiology studies that the IOM bases its findings on are not immune from conflicts or controversy.  Many of the authors have conflicts of interest including funding from vaccine manufactures, employment by manufacturers, or conflicts in that they implemented vaccine policies that are now being investigated.  Furthermore, the studies were designed to examine entire populations and would miss subgroups of genetically susceptible populations.  Much like the infamous 1989 study by The National Institute of Child and Human Development (NICHD) which missed the link between folic acid deficiencies and neural tube defects, the epidemiology studies reviewed by the IOM in drawing today' s findings, could easily have missed a link between thimerosal and NDDs. The IOM report is based on studies examining populations in the United Kingdom, Denmark, Sweden and the United States – all of whom have different vaccines, vaccine policies, and mercury exposures. Study results are only as reliable as the design of such studies.  Relying on these studies to draw conclusions is shaky ground.
 
The IOM is not immune to error and has been forced to reverse itself before, most recently reversing a long-standing finding that chronic lymphocytic leukemia (CLL) was not due to Agent Orange exposures.   A similar reversal is a very real possibility here.
 
With regard to the MMR vaccine, the IOM review of this matter is totally premature; the NIH is only now attempting to duplicate the work of Dr. Andrew Wakefield.  Half of Dr. Wakefield' s work has been demonstrated to be correct.  Attempting to draw “conclusions”at this time is counterproductive.  Statistical studies of this matter are of little benefit, only a clinical pathological study will lay this issue to rest.
 
Lastly, I am also troubled by the lack of liability or accountability by these decision-makers should they be proved wrong.  I want more than just a “sorry”from them should their conclusions be found erroneous a few years down the road. Too many lives are at stake.

b) Autism's Surge Mystifies

www.usatoday.com/news/health/2004-05-17-autism-surge_x.htm

The Institute of Medicine, which provides advice on science and health to government, is expected to release a report today that conclusively dismisses the theory of thimerosal as a cause of autism.

An immune-system link is supported by some doctors and parents of children with autism who believe that a mercury-based preservative that has been used in childhood vaccines is at the core of the problem.

Thimerosal is being phased out of most vaccines for children, but some lots that contain the preservative are thought to be on doctor's shelves. Some studies have suggested that children with autism are less able than others to expel mercury from their systems, and some parent groups think multiple vaccines given to young children weaken the immune system and allow a build-up of mercury in developing brains.

Other scientists say this theory has been thoroughly investigated, but no conclusive evidence has been found. They say a continued focus by activists on thimerosal may undermine confidence in vaccines and divert funding from more promising theories. The Institute of Medicine, which provides advice on science and health to government, is expected to release a report today that conclusively dismisses the theory of thimerosal as a cause of autism.

http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=109&STORY=/www/story/05-12-2004/0002172780&EDATE

c) Vaccine Link to Child Autism Epidemic

http://www.safeminds.org/

"Our hope is that ... this IOM report will stop playing politics with the lives and health of our children and call for the aggressive enforcement of the joint recommendation made ... five years ago to remove mercury from all vaccines given to children ... " - Lyn Redwood, RN, MSN, NP, president of SafeMinds

WASHINGTON, May 12 /PRNewswire/ -- SafeMinds -- America's leading scientific organization investigating the risks that mercury-containing medical products pose to our children -- is cautiously awaiting the public release of the government's report from the Institute of Medicine (IOM) regarding the vaccine link to America's autism epidemic.
"Our hope is that, once-and-for-all, this IOM report will stop playing politics with the lives and health of our children and call for the aggressive enforcement of the joint recommendation made by the U.S. Public Health Service and American Academy of Pediatrics (AAP) five years ago to remove mercury from all vaccines given to children," stated Lyn Redwood, RN, MSN, NP, president of SafeMinds. "Our primary concern over the past year remains the same: that the February 2004 meeting was premature and was scheduled as a direct result of political pressure being applied to the IOM by the CDC. By forcing the meeting in February, the CDC ensured that key scientific studies – whose conclusions in support of the vaccine-autism link were just being prepared at that time -- would be ineligible for inclusion in the forthcoming report." The majority of the government's requested presenters seemed to be pre-occupied with the need to count and recount the number of children possibly affected by the vaccine-autism link, rather than look at the actual level of injury or possible resolutions. "This is a medical issue, not one for the number crunchers. The time for the government to set aside the numbers spinning and fulfill its duty to protect our children and families from this threat is long overdue," Redwood said. "Even Congress is frustrated by the lack of aggressive action and is taking steps to fulfill this duty with the bi-partisan bill, HR 4169, introduced by Reps. Dave Weldon, M.D. (R-Fla.) and Carolyn Maloney (D-N.Y.)."

SOURCE SafeMinds

d) Together, Anything's Possible – HR 4169 to remove MERCURY from Vaccines

Your help is needed to make sure that Congressman Weldon's bill, HR 4169, moves forward in Congress. Please take a few moments to copy this letter and fax it into your Representatives and Senators and also consider adding your signature to our petition at http://www.nationalautismassociation.org/petition.htm that will eventually go to all members of Congress asking for the complete removal of Thimerosal from all vaccines. Your faxes really do make a difference. Please let your voices be heard.

The NAA Team

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From SafeMinds:

Below are the sample letters we discussed at the recent Washington, DC area Autism conferences, to help you support Dr. Weldon's bill before Congress.  Please note the sections which require your personalization.  Feel free to modify/personalize to make it YOUR letter.  However, we caution you not to make the letters too long 1 page is preferred, 2 pages maximum.  We suggest you fax these letters to your Representative and Senator.  To find out who your elected officials are and their contact and fax numbers, go to http://www.house.gov/ and www.senate.gov.  After faxing, wait 1 or 2 business days and call your elected official's office(s) and remind them of your position and mention that you faxed in a letter.
 
We have made great progress in protecting the nation's children from needless exposures to mercury - this bill is one more step in offering further protection.
 
Your friends at SAFEMINDS
www.safeminds.org

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Sample Letter to Your Congressman:
 

May 12, 2004
 
Type Name
Typed Address
Typed City, State, Zip
Typed Telephone:
Typed Email:

Delivered Via Facsimile: (Type in Fax Number)
 
The Honorable (Type In Name)
United States Congress
Washington, DC 20515
 
Dear Representative (Type in Last Name):
 
As a parent and constituent, I am writing to request that you join Congressman Dave Weldon, MD of Florida and Congresswoman Carolyn Maloney of New York as a cosponsor of HR 4169, the Mercury-Free Vaccines Act of 2004. This bill is an important step to protecting children from future medical exposures to mercury.
 
Five years ago, after Congress requested that the Food and Drug Administration (FDA) evaluate the level of mercury in medical products, it was discovered that the exposure to mercury in the first six months of life through vaccinations exceeded at least one Federal safety standard. This previously unrecognized exposure was from thimerosal, a mercury-laden preservative previously banned as a topical ointment. All forms of mercury, including that found in vaccines, have the potential to cause harm to the brain. In 1999, the U.S. Public Health Service, of which the FDA is part, joined with the American Academy of Pediatrics and manufacturers in announcing that a move to thimerosal free vaccines was possible and preferred. Since that declaration most, but not all, vaccines are now available in mercury-free forms.
 
Without a ban, however; there is no guarantee that our children will be protected from future similar exposure to mercury. Without a ban, however; medical exposures to mercury through vaccination remain a possibility. Of additional concern is that children in other countries are being injected with mercury through vaccine produced in the United States. These children need our protection as well.
 
In the 70 years since thimerosal was first used in vaccines, science has made great strides in understanding the danger of exposure to even minute levels of mercury. We have succeeded in removing mercury in many items such as paints and thermometers; and warnings are routinely issued about mercury in fish. Thimerosal, marketed as the topical ointment Mercurochrome, was banned specifically due to recognition that exposures to mercury could be harmful.
 
As a parent and constituent, I hope you will move quickly to support this effort to protect our children from the potential harm and tragedy of injury from medical exposures to mercury. {IF APPROPRIATE, you can insert – I have a child (or grandchild) who has been adversely affected by exposure to mercury through (his or her) vaccines. I would be pleased to provide you further information. I will be contacting your office in the near future to follow up on this request.
 
Sincerely,


Typed Name
Concerned Parent


Editor' s note: With so much news on this issue, it is impossible for me to cover it all. It truly baffles me how such differing views can occur on one topic.

Date: Saturday, June 12, 2004
(in lieu of the regular TACA Costa Mesa Meeting)

Goals of the Seminar:
After receiving the diagnosis of autism for a beloved child (or children), parents typically struggle as they search through various resources to locate information needed to help their child the fastest. The goal of the one-day New Parent Orientation is to provide parents and caretakers the “jump start”they need at the beginning of their journey from parents who have “been there, done that.”In addition to sage advice, parents who attend will receive: an overview of beginning therapies and biomedical intervention, where to go for what information, and recommended first steps. The seminar will be given by experienced parents who volunteer their time in providing the education new parents need.

Note: Seminars will be available via TACA on a quarterly basis.

Who should Attend?
This one-day seminar is geared for parents and caretakers of children affected by autism in Southern California. Content will be provided in an “overview”presentation with web and book resource information for additional details. This seminar is geared to parents and caretakers new to the autism journey (less than 6 months) who have not yet started a behavioral/educational program or biomedical testing and interventions.

Seminar Agenda

1. Introductions & review of the agenda
2. What's in a diagnosis?
3. Surviving the first year
4. Biomedical (necessary tests and protocols)
5. Therapies (including: behavioral, academic, play therapies, social skills, speech & more!)
6. Dietary Interventions
7. Legal issues
8. Organization & Planning 101
9. Questions and Answers

Seminar Time: 9:30am – 4:00pm (refreshments and light lunch to be served)
Seminar Location: Location is in Costa Mesa, CA by South Coast Plaza. Location confirmation and address will be sent once registration payment and information is received.
Seminar Costs: PARENTS & CARETAKERS: $20 registration and materials fee required
Non Parents/Professional registration: $50 registration and materials fee required
How to Register: Registration fee made payable to TACA
Mail fee to TACA at PO Box 12409, Newport Beach CA 92658-2409
Registrants MUST INCLUDE: name, email address, and address.
Available spaces are LIMITED! Be sure to RSVP @ least 10 days before the seminar!
Babysitting: Sorry, babysitting and child care is NOT available at these seminars.

For more information: Please contact Lisa Ackerman at tacanow@cox.net or 949-640-4401 or www.tacanow.com

Seminar funding and assistance is provided by TACA (Talk About Curing Autism) – Families helping Families

Coffee Talk is going to be your hour (or so) once the kids are away at school or busy working in therapy to chat with other families affected by Autism. This is an unstructured, casual meeting environment to chat and talk about what you want to talk about.

Date: Tuesday, June 15th
Time: 9:00 a.m. – 10:30 a.m.
Location: Diedrich Coffee – Costa Mesa 1170 Baker Street (off the 405 freeway and Fairview Street)

NO need to RSVP, just join us for a little coffee, a little talk, no big whoop!

Lots of updates to the TACA website! See what's new here:
www.tacanow.com/whats_new.htm

1. New Parent Orientation – 1 day seminar - Saturday, June 12, 2004
2. CA State Law AB 88 Health Insurance
3. Health Insurance Reimbursement Tips (from the TACA Costa Mesa March meeting!)
4. Who Pays for What?
5. Latest Autism Statistics
6. SCD Diet