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What is the IACC charged to do?

12 Jul

The Interagency Autism Coordinating Committee (IACC) is charged with certain responsibilities under the law. At the same time, the scope of the IACC is actually quite limited and often misunderstood. In my opinion, the word “coordinating” may be a bit of an overstatement as the committee does not control funding nor does it have the power to make policy or to initiate research.

Here are the responsibilities of the IACC, as well as some of the limitations of the IACC, from the IACC Charge Document.

Statutory Responsibilities of the IACC under the Combating Autism Act and
Combating Autism Reauthorization Act

The IACC was established to coordinate all efforts within the Department of Health and Human
Services concerning autism spectrum disorder and is required to:

Develop and annually update a strategic plan for ASD research, and submit the strategic plan
and annual updates to Congress.

Develop and annually update a summary of advances in ASD research.

Monitor federal activities with respect to ASD.

Make recommendations to the HHS Secretary regarding research or public participation in
decisions related to ASD.

Meet at least twice a year (full committee) and conduct meetings in public with time for public
participation (public comment).

The committee may establish subcommittees and convene workshop and conferences.

How has the IACC executed these responsibilities?

The IACC serves as a forum for coordination, communication and collaboration between Federal
agencies, private organizations and community stakeholders.

The IACC developed its first strategic plan in 2009 and updated it in 2010 and 2011 with the goal
of focusing and accelerating research. The plan was developed with public input and a focus on
community needs.

The IACC has issued an annual Summary of Advances in ASD Research document each year –
2007, 2008, 2009, 2010 and 2011.

The IACC issues a Portfolio Analysis Report to analyze Federal and private funding for research
and how funding aligns with priorities identified in the Strategic Plan.

The IACC/OARC are launching a public database to provide information on federal and private
funded research projects.

IACC members and guest speakers provide research and services program updates at each
meeting of the IACC.

The IACC/OARC issues special reports on ASD activities such as the IACC/OARC ASD Research
Publications Analysis.

The IACC has made recommendations to the HHS Secretary in the Strategic Plan and through
advisory letters.

The IACC gathers public input and information on emerging issues in the autism community
through written and oral public comments at meetings of the full IACC, town hall meetings,
workshops and formal requests for public comment; all meetings, including phone meetings, are
open to the public by phone, webcast and/or webinar.

The IACC provides information to the public through its activities (all open to the public), public
website, news updates, listserv and Twitter announcements.

What is the committee not required or authorized to do?

To fund research – the IACC does not have or control a research budget.

To implement research or services programs – programs can only be implemented by
government agencies and private organizations.

To set government policies – the IACC is an advisory body that can raise awareness and make
recommendations for development or adoption of policies, but only government agencies and
private organizations can set policies.

To force government agencies to fund specific research projects or set particular policies.

Many seem to think of the IACC as a funding agency, or an group which sets the research agenda. It is “an advisory body”.

In my opiion, it is an advisory body which people listen to. Most of the research projects proposed in the Strategic Plan have been funded (which is pretty good in these economic times). Researchers I have spoken with have respect for the IACC.

By Matt Carey
(I serve as a public member on the IACC but all opinions expressed here and elsewhere are my own)

Autism Spectrum Disorder Reclassified: A Second Look at the 1980s Utah/UCLA Autism Epidemiologic Study

3 Jul

In the 1980’S a major epidemiological study was performed by UCLA researchers focused on the population of Utah. This resulted in six publications. One study, the prevalence paper, has now been revisited recently with results indicating that the broadening of autism criteria with the shift from DSM III to DSM IV had a major impact on prevalence. In particular, on the prevalence of individuals with lower IQ’s.

Yes, the the DSM III missed a large number of individuals with low. IQ.

Here is the abstract from the 1990 study:

The UCLA-University of Utah epidemiologic survey of autism: Prevalence

Ritvo ER, Freeman BJ, Pingree C, Mason-Brothers A, Jorde L, Jenson WR, McMahon WM, Petersen PB, Mo

Division of Mental Retardation and Child Psychiatry, University of California School of Medicine, Los Angeles.

The authors conducted an epidemiologic survey in Utah using a four-level ascertainment system, blind current diagnostic assessments, and DSM-III criteria. Of 483 individuals ascertained, 241 were diagnosed as having autism. The best estimate for the prevalence rate was 4 per 10,000 population. Autism was not associated with parental education, occupation, racial origin, or religion. Sixty-six percent of the autistic subjects scored below 70 on standardized IQ tests, and females scored proportionately lower than males. Twenty (9.7%) of 207 families had more than one autistic sibling, which supports the authors’ previous finding that there may be a familial subtype of autism

The recent study is:

Autism Spectrum Disorder Reclassified: A Second Look at the 1980s Utah/UCLA Autism Epidemiologic Study.

Here is the abstract:

Abstract The purpose of the present study was to re-examine diagnostic data from a state-wide autism prevalence study (n = 489) conducted in the 1980s to investigate the impact of broader diagnostic criteria on autism spectrum disorder (ASD) case status. Sixty-four (59 %) of the 108 originally “Diagnosed Not Autistic” met the current ASD case definition. The average IQ estimate in the newly identified group (IQ = 35.58; SD = 23.01) was significantly lower than in the original group (IQ = 56.19 SD = 21.21; t = 5.75; p < .0001). Today’s diagnostic criteria applied to participants ascertained in the 1980s identified more cases of autism with intellectual disability. The current analysis puts this historic work into context and highlights differences in ascertainment between epidemiological studies performed decades ago and those of today.

Emphasis added.

This goes counter to the common perception that the expansion of diagnostic criteria was confined to adding so-called “higher functioning” autistics.

Comparing these results to the recent CDC results show that much of the increase in Utah was due to inclusion of higher IQ individuals. The recent prevalence estimate for Utah was 212/10,000 with most with IQ >70. One has to note that the prevalence estimate from the recent CDC report is roughly 20/10,000, about 5x higher than the UCLA report from 22 years ago. (further note that the CDC data for Utah are based on only 45 autistics so the error bars are very big).

It would be interesting to go through the screening process from the UCLA study to see how well they might have been able to capture individuals without intellectual disability.

This study doesn’t explain a substantial fraction of difference between the 1990 prevalence and the most recent estimate. It does point to a shift in diagnostic standards for low IQ individuals.

How Does Relaxing the Algorithm for Autism Affect DSM-V Prevalence Rates?

28 Jun

There has been much discussion of the impact the DSM 5 will have on who will be diagnosed with autism. Another paper exploring this came out yesterday: How Does Relaxing the Algorithm for Autism Affect DSM-V Prevalence Rates?. The abstract is below:

Although it is still unclear what causes autism spectrum disorders (ASDs), over time researchers and clinicians have become more precise with detecting and diagnosing ASD. Many diagnoses, however, are based on the criteria established within the Diagnostic and Statistical Manual of Mental Disorders (DSM); thus, any change in these diagnostic criteria can have a great effect upon children with ASD and their families. It is predicted that the prevalence of ASD diagnoses will dramatically decrease with the adoption of the proposed DSM-5 criteria in 2013. The aim of this current study was to inspect the changes in prevalence first using a diagnostic criteria set which was modified slightly from the DSM-5 criteria (Modified-1 criteria) and again using a set of criteria which was relaxed even a bit more (Modified-2 criteria). Modified-1 resulted in 33.77 % fewer toddlers being diagnosed with ASD compared to the DSM-IV, while Modified-2 resulted in only a 17.98 % decrease in ASD diagnoses. Children diagnosed with the DSM-5 criteria exhibited the greatest levels of autism symptomatology, but the Mod-1, Mod-2, and DSM-IV groups still demonstrated significant impairments. Implications of these findings are discussed.

Without the full paper it is difficult to compare the modified criteria. Also, from the abstract alone we can’t tell much about the methodology of the application of the DSM 5 and the two modified criteria. Keeping those very large caveats in mind, this study points to a lower rate of autism diagnoses for toddlers under the DSM 5, even with modifications. The study does not appear to address the question of the effect of the DSM 5 on diagnosing adults.

The need for tissue donations

26 Jun

The recent loss of tissue from one of the tissue banks is a major setback to autism research. Tissue, brain tissue in particular, is an incredibly scarce resource. This loss only highlights the need for tissue and the need for individuals and families to plan ahead on the question of tissue donation.

The Simons Foundation has a discussion of this in: Guest blog: The case for brain donation was written by Autism Science Foundation’s Alison Singer.

She addresses the fact that no one wants to think about being in a position to be a tissue donor, but that advanced planning is critical:

Fortunately, my daughter with autism is alive, happy, energetic (sleepless, in fact) and vivacious. I can’t imagine her any other way. Donating her brain is not something I really want to think about, but as parents of children with autism, we have to. And we have to think about it now, in advance of the period of grief and confusion that follows the loss of a child or other family member.

She refers people to the Autism Tissue Program website. The ATP is run by Autism Speaks.

Autism organizations–Autism Speaks, Autism Science Foundation, Simons Foundation–are all working towards the goal of improving access to tissue samples for research.

ATP has information on donation and registration for donation.

Another place to register isThe Eunice Kennedy Shriver NICHD Brain Tissue Bank. You (either as an autistic or a non-autistic relative) can register there.

From defense of MMS to attacks

21 Jun

When I first heard of Miracle Mineral Solution (aka MMS) and it’s presentation at AutismOne, I thought that here was something so obviously bad in both theory and execution that pretty much anyone who took a critical look would agree: why is this faux therapy being promoted?

Paint me naive.

I thought that AutismOne might actually reconsider their promotion of giving bleach to disabled children.

Paint me naive again.

I thought that perhaps the Age of Autism blog would stay away from this, allowing it to sink into the past. The best I’ve seen so far is a non-pology from Kim Stagliano:

“AofA isn’t endorsing the protocol or slamming it – just providing perspective via one of our wonderful contributors.”

About par for the course.

While I am naive, I will say that I did expect that there would be a core of MMS users who would not take kindly to the discussion. And in this I am not surprised. Apparently, “investigative journalist” Kelly Stone has submitted a response to Todd Drezner’s Huffington Post article The Curious Case of Autism and MMS. I assume this is intended for the Huffington Post to publish. If so, Ms. Stone may be in for disappointment.

Ms. Stones’ response is on an MMS discussion forum.

Huffington Post – Negative Exposure

Todd Drezner’s “A Curious Case of Autism Exploitation”

By Kelly Stone

Investigative Journalist

In it Ms. Stone takes the attack on Mr. Drezner right away

Signature contributor to the Huffington Post, Todd Drezner, takes ‘blogging for dollars’ to a whole new level with his latest post on Autism. Drezner’s online column is little more than a clever marketing effort for his self-directed documentary, “Loving Lampposts: Living Autistic”.

Yes. It’s all supposedly about Mr. Drezner making money from his movie “Loving Lamppoosts“.

As an aside, Ms. Stone seems to have difficulty with the concept of what a director is in film-making. The term “self-directed” is very odd in this context.

After introducing and attacking Mr. Drezner, Ms. Stone then takes on attacking Emily Willingham, Ph.D..

Willingham, known elsewhere as “Daisy May Fatty Pants” is a contributor to “A Thinking Person’s Guide to Autism”. – According to the Child Health Safety blog, Willingham is a “self-professed scientist with selective blindness to basic observations”. All too à propos, Drezner and Willingham team up in their petition to denounce chlorine dioxide therapy as “child abuse”, a sobering case of irony given it could be the very thing its signers have been looking for.

Ms. Stone, investigative journalist, is welcome to do just a little more digging than the junk blogs she’s read and discover that Emily Willingham is much more than a “self-professed” scientist. A simple google search (which I assume Ms. Stone did, then ignored the results) will quickly get one to http://www.emilywillinghamphd.com/. Her biography includes:

I have been a dedicated writer since about 1972 and practicing science since 1996. My background, as I say in cover letters, includes a bachelor’s degree in English and a PhD in biological sciences, both from The University of Texas at Austin, with a completed postdoctoral fellowship in pediatric urology at the University of California, San Francisco. Throughout, my focus was vertebrate development and genetics, specifically how gonads and penises develop. Talking about my work has always carried a frisson of the risque.

I’ve seen Ms. Willingham’s publication list. It is impressive. Which is just one point of many which can be used to say: Emily has the chops to call herself a scientist. Frankly if you don’t follow her writing, I’d recommend you do. (Thinking Person’s Guide to Autism and Biology Files are two good places to see her work).

Ms. Stone, investigative journalist, moves into defending MMS. First she pulls a quote from a US Patent. Notably, I only find references to this patent on (a) patent search sites and (b) MMS sites. Ms. Stone appears to have not done much investigation.

Here is her discussion of the patent:

However, based upon clinical research, a 1993 U.S. Patent (No. 6086922) states the following facts about sodium chlorite and chlorine dioxide:

“It is therefore quite unexpected that, with an intravenous administration of an appropriate chlorite matrix in the appropriate concentration, HIV viruses can be directly combated in the blood… The chlorite matrix solutions of the present invention also do not exhibit adverse effects such as severe cytotoxic damage and the like, typically associated with highly toxic chemicals which are administered intravenously [i.e. vaccines]. The chlorite matrix solutions of the present invention further are capable of inactivating the HIV virus to thereby inhibit infection of undamaged cells.”

Wow! Did you read that? Chlorine dioxide, via sodium chlorite (aka “MMS”), is effective at “combating”, “inactivating”, and “inhibiting” HIV, without any “adverse effects”. Why doesn’t your doctor know about this? I have a few ideas, but let’s put that aside and stick with the facts.

Let’s put that sentence from the patent back into context, shall we. And emphasize a few points while we do:

However, the use of chlorite solutions for parenteral administration typically was not thought to be possible because of their extraordinary toxicity.

It is therefore quite unexpected that, with an intravenous administration of an appropriate chlorite matrix in the appropriate concentration, HIV viruses can be directly combatted in the blood, demonstrated by the rapid and strong decrease of the viruses detectable in the blood.

First notice that the [i.e. vaccines] was added by Ms. Stone or someone else. Second, notice that the inventor notes that these solutions have “extraodinary toxicity”, but by chosing the “appropriate concentration” they can find a solution which they think is viable.

Appropriate concentration. Sounds a lot like “dose makes the poison”, right?

How does one chose the “appropriate concentration” of MMS? By upping the dose until the subject is obviously sickened. From the MMS handout for AutismOne

Weird things can happen when we begin using MMS

The immune system wakes up and sometimes we find the body detoxing an old cold, flu or rash. It is common to find that the child gets a fever. This is good.

There is so much pseudo-science in that statement it is difficult to imagine someone presenting that with a straight face. No evidence that the fever is due to “detoxing an old cold” or the other nonsense.

Ms. Rivera even has a slide devoted to “Fever Therapy with MMS”, essentially telling parents to dose their kids until they have a fever reaction.

One need only do a simple internet search for MMS and nausea to see that this is a common and expected reaction to MMS. Some people try to paint this nausea as a “good sign” as well.

Back to Ms. Stone. And the patent she cites to defend the use of Chlorine Dioxide. Here’s another section of that patent:

A significant inhibition of a new infection is found in vitro even at concentrations of 5 micro-mo1/l, whereas a concentration of 150 micro-mo1/l brings about a practically complete inhibition. However, concentrations of more than 100 ,micro-mo1/l can, over a prolonged period of time, lead to cytotoxic damage. Thus, concentrations of from 10 to 100, preferably of from about 40 to 80 and especially of 50 micro-mo1/l are preferred.

So, the dose described in the patent is chosen to avoid cytotoxic damage. They can’t reach the concentrations needed for complete inhibition of HIV due to this limit.

Apparently, investigative reporter Kelly Stone didn’t read the full patent as she makes the blanket statement:

OK, so sodium chlorite and chlorine dioxide are relatively safe to use intravenously, but what about oral ingestion, is that safe? A very good question; one Drezner might have thought to research.

I guess it depends on your definition of “relatively safe”.

When considering the value of this patent, keep this in mind. There’s an old saying: patents don’t have to be correct, they have to be novel. (think of Andrew Wakefield’s vaccine patent for an example of an idea which wouldn’t work but was patented). When was the last time, or only time, you heard someone talk about treating HIV patients with IV bleach?

If you are like me, the answer is never. The invention appears to have never been used. Well, never used except to defend MMS.

As an aside–another of the arguments has been, “of course Big Pharma would downplay this. They can’t patent it and make money off of it”. Then why did Oxo Chemie of Switzerland patent this?

In her attempt to paint Todd Drezner as a profit-driven Ms. Stone quotes from Mr. Drezner’s documentary:

“Autism is a gift disguised as a dilemma”, a profound take-away from Drezner’s documentary; but rest assured Drezner’s film isn’t a “gift” to the Autism community. No, you’ll have to buy the DVD, or have a paid Netflix account to watch it.

That’s exactly the kind of propaganda the medical-industrial complex can really get behind. Build your world around Autism! Accept it, don’t fix it! To quote the documentary, “You ‘cure’ hams… and ‘treat’ people.” This is the standard medical line. There’s no money in curing, only in perpetual treatment… well, that and selling DVDs.

Actually, you can see the segments she discusses online. And in those segments you can see that the comments are not made by Mr. Drezner. “Autism is a gift disguised as a dilemma” and “You ‘cure’ hams… and ‘treat’ people.” are quotes from Sharisa Kochmeister, autistic adult featured in Loving Lampposts.

It’s rather a stretch for the author to claim that Ms. Kochmeister is somehow involved in profiting from the lack of an autism cure.

This article is already rather long so rather than go on point by point in response to Ms. Stone’s attack, I’ll skip to the end of her piece:

Much unlike Drezner, we will be contacting the parents of the children that have reportedly made significant improvements using MMS, and we are currently collecting case by case clinical data showing MMS does what those singing its praises claim.

The thought crossed my mind; who’s underwriting Drezner, someone with ties to the FDA or Big Pharma? In a huge effort to not allow myself to be given over to absolute speculation like Drezner, I will wait and report my findings when they become factual.

Surprised by this conclusion? Both the “we have anecdotes” claim and the “pharma shill” gambit, with the “I’m more open minded because while I am attacking him, I’ll reserve final judgement until I have evidence” approach.

Would that she applied the same reasoning to MMS. As in waiting for evidence. Not anecdotes, evidence. How about at least something speaking more to biological plausibility. Again, paint me naive. The website she works for has already defended MMS using the anecdote defense.

Ms. Stone writes for the US~Observer. My strong suspicion is that her article will end up there with a complaint that even the Huffington Post wouldn’t take her article. But, we are talking about the Huffington Post. I’ve been caught being naive before.

Criminal Charges Dropped Against Chronic Fatigue Syndrome Researcher Judy Mikovits

15 Jun

Science Insider has been reporting on the research and, well, drama surrounding the idea that XMRV (Xenotropic murine leukemia virus-related virus) and its proposed link to chronic fatigue syndrome.

XMRV has also been proposed as being linked to autism.

This research came out of the Whitemore Peterson Institute (WPI) and former WPI research Judy Mikovits.

There has been a lot of controversy over the research (for example, Science retracting one paper) as well as Ms. Mikovits. Judy Mikovits was let go from WPI and later charged with having materials removed from the institute. Charges around that have been dropped , but a civil case is still active.

Last November, the district attorney in Washoe County, Nevada, filed a criminal complaint against Mikovits that charged the virologist with illegally taking computer data and related property from her former employer, the Whittemore Peterson Institute for Neuro-Immune Disease (WPI) in Reno, Nevada. In a separate civil court that month, WPI filed suit against Mikovits over her alleged possession of similar material, which included the laboratory notebooks she compiled while doing the CFS research.

On 11 June, the district attorney’s office for Washoe County filed a petition to dismiss the criminal charges against Mikovits without prejudice (which means they can file a related complaint in the future), a clerk to the Justice Court of Reno told ScienceInsider.

Ms. Mikovits joined the team of Ian Lipkin who is part of the multi-site team investigating the proposed XMRV/CFS link:

Mikovits told ScienceInsider that the only work she has been able to find has been collaborating on a large study funded by the National Institutes of Health that should be the final word on the otherwise dismissed theory that CFS is linked to a mouse retrovirus, XMRV, or its relatives. “Everyone who wanted to work with me was deterred by the threat of litigation,” Mikovits wrote in an e-mail.

The results of the large study, led by Ian Lipkin of Columbia University, are expected to be revealed in the next few weeks.

The proposed XMRV/autism link was made public before any scientific results were made available. However, two papers have been published since that news broke pointing away from an XMRV/autism link

Lack of infection with XMRV or other MLV-related viruses in blood, post-mortem brains and paternal gametes of autistic individuals.

and

PCR and serology find no association between xenotropic murine leukemia virus-related virus (XMRV) and autism.

The Curious Case of Autism and MMS

14 Jun

Todd Drezner, who brought us the wonderful film “Loving Lampposts”, has a new article up at the Huffington Post: The Curious Case of Autism and MMS.

I’m going to say something radical, something that may shock you. Brace yourself. Are you ready? Here goes:

It’s not a good idea to make children drink bleach.

If you’re not familiar with the autism community, you may wonder why my statement would ever be considered controversial. Unfortunately, in the autism community, where there are disagreements about everything, even this seemingly straightforward statement causes arguments.

It’s worth a read and a comment. Even though it is painful to read.

MMS supporters fight back…by the dozens…

12 Jun

Emily Willingham and Jennifer Byde-Myers created a Change.org petition No bleach enemas to “cure” autism in children! Right now there are over 1,700 signatures to that petition. If you haven’t signed yet, consider doing so now.

The “inventor” (Jim Humble) of MMS (Miracle Mineral Solution) started his own petition to defend the practice: Emily Willingham: Stop telling people that MMS is bleach because it is not.

The petition is short…and incorrect:

Stop telling people that MMS is bleach because it is not

Because there are some mothers that don’t realize that Emily is wrong and they may never help their child to attain normalcy.

Which so far has 46 of the hoped-for 1,000,000 signatures he was seeking. Mr. Humble, of course, is one of the 46.

As is “credulous nimrod”

Just because this is exactly the same chemical as bleach doesn’t mean Emily should call it bleach! This is because of reasons. And quantum mechanics. And I trust that Jim Humble would never lie to desperate parents just because he’s selling this product for a profit! Enough of the medical establishment and their “science” and their “first, do no harm.” We want pointless feel-good actions that take advantage of our sadness and our scientific illiteracy!

and “Igor K”

Stop the fearmongering. Just because sodium chlorite bleaches through oxidation and is grouped with other chlorine bleaches that operate in a similar fashion (i.e. chlorine dioxide, chlorine, and calcium hypochlorite does not make it a bleach. That tits industrial manufacturer’s label it as such also means nothing. I regularly drink inappropriately named acidic drain cleaners to relieve constipation. That the public health agencies all over the world recognize MMS’ risks as poisoning, renal failure, reduction of the ability of the blood to carry oxygen, abdominal pain, nausea, vomiting, and diarrhea doesn’t mean they know what they are talking about. To prove it, I volunteer myself along with everyone to sign this petition for a public demonstration where each person will consume a gallon of undiluted sodium chlorite without any deleterious health effects. Then, they will have to accept it as evidence of our correctness.

And this even with people promoting the petition. It seems safe to say that MMS does not have a broad base of support.

I can not recall anything which has been touted as a method to “recover” children from autism has ever been publicly rejected by groups promoting so-called “biomedical” approaches. But here’s a chance to step up to the plate.

The Autism Research Landscape: The IACC, Research Funding and Data Sharing

12 Jun

Susan Daniels, Ph.D., is Acting Director, Office of Autism Research Coordination at the U.S. National Institute of Mental Health, NIH. She spoke at IMFAR 2012 on The Autism Research Landscape: The IACC, Research Funding and Data Sharing (click for the power point slides).

Below are a few points that caught my eye. (the entire presentation caught my eye, but here are a few I will highlight!)

As this will be the first meeting under the reauthorized Combating Autism Act (or CARA), the membership has changed. The federal members are

Thomas Insel (NIMH, NIH)
James Battey (NIDCD, NIH)
Linda Birnbaum (NIEHS, NIH)
Coleen Boyle (CDC)
Francis Collins (NIH)
Denise Dougherty (AHRQ)
Tiffany Farchione (FDA)
Alan Guttmacher (NICHD, NIH)
Laura Kavanagh (HRSA)
Donna Kimbark (DoD)
Walter Koroshetz (NINDS, NIH)
John O’Brien (CMS)
Alexa Posny (Dept of Ed)
Sharon Lewis (Administration for Community Living)

Members in bold are new.

Public members are:

Idil Abdull (Parent, Somali American Autism Foundation)
James Ball (JB Autism Consulting)
Anshu Batra (Parent & Developmental Pediatrician)
Noah Britton (Self advocate)
Sally Burton-Hoyle (Family member, Eastern Michigan University)
Matthew Carey (Parent)
Dennis Choi (Simons Foundation)
Jose Cordero (University of Puerto Rico)
Jan Crandy (Parent, Nevada State Autism Assistance Program)

Geraldine Dawson (Autism Speaks)
David Mandell (University of Pennsylvania)
Lyn Redwood (Parent, Coalition for SafeMinds)
Scott Michael Robertson (Self advocate, Autistic Self Advocacy Network)
John Elder Robison (Self advocate & Author)

Alison Tepper Singer (Parent, Autism Science Foundation)

Note that I am in the list above. Further note that I do not represent the IACC here or elsewhere.

The responsibilities of the IACC are:
1) Advise HHS’ Secretary Sebelius

2)Establish autism research priorities
IACC Strategic Plan for ASD Research

3) Monitor Federal activities and analyze research trends
IACC ASD Research Portfolio Analysis

4) Communicate advances in the field
IACC Summary of Advances in ASD Research

Autism research is over $400 million per year in the U.S.. Of that 82% is funded by the federal government. Autism research funding has nearly tripled over the past decade, but appears to be reaching a plateau for the next few years.

There is an effort to promote data sharing among research teams. For autism there is the National Database for Autism Research (NDAR) Tom Insel, director of the U.S. National Institute of Mental Health (NIMH) and chair of the IACC has also recently written an article: Time Matters – Why We Care So Much About Data Sharing

A brave Biomed group

12 Jun

The website nnyautismcenter.com has the following warning posted:

Alert Issued On Danger Supplement

Miracle Mineral Supplement and Miracle Mineral Solution marketed online as health supplements which have beneficial effects against a wide range of illnesses, is similar to industrial-strength bleach! This chemical is 28% sodium chlorite – which becomes bleach when mixed with citric acid. Taken as instructed severe vomiting and diarrhea may result while incorrect mixing of this product could lead to respiratory failure with damage to the gut and red blood cells.

Consumers are urged to dispose of the supplement as soon as possible. It is further recommended that if anyone finds either of these supplements on sale anywhere to promptly report it to local authorities.

Why is this brave? Because nnyautismcenter has an epidemic and Biomed focus. They don’t seem to be into mercury and vaccines, but they are into diets and immune system testing.

But if they can see that MMS is dangerous and warn their customers, why are other autism groups promoting MMS?