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More Canary Party financial documents

1 Aug

The Canary Party is a tiny organization focused on promoting the idea that vaccines cause autism. They have branched out some with GMOs and “health freedom”, but their core seems to be the failed idea that vaccines cause autism. I’ve previously posted some of their financial documents (here and here)

Here are finance disclosure forms for
2011
2012
2013
2014

They took in
$72,018.66 in 2011
$48,748.95 in 2012
$17,425.00 in 2013
$6,275.00 reported as of June 2014

they had about $3,100 on hand as of June 2014. Where before they had some large donors and a number of small donors, so far this year all donations have been from Canary Party officer Jennifer Larson.

In previous years, they had thousands of dollars in expenses for stays at the Hyatt/Ritz and Hyatt/Four Seasons, this year they have two modest travel expenses totaling under $1000.

No parties gatherings are listed this year like their $11,000 convention in 2012.

They’ve become less transparent in their expenses. In 2013 they list $4,500 as “Dues and Membership Fees: Software” and $2,250 one month and $2050 another in “Other Services: Outside Services”. Some or all of that could be payments to blogger Ginger Taylor, who in 2011 and 2012 was paid $4,500 a month for parts of the year as “media consultant” and “Public Relations/Fundraising Service”. Hard to say, it’s not transparent.

It looks like this effort may keep moving along, self funded at a low level, for the foreseeable future. But as a major, grass-routes organization it seems to be failing.


By Matt Carey

Are congressmen Justin Amash and Rick Nolan being courted by the vaccine/autism community?

30 Jul

The groups promoting the idea that vaccines have caused an epidemic of autism have always been politically active. There’s been a resurgence in recent years, with the Canary Party and lobbying and donations and lobbying asking for congressional hearings on autism. When I got an email today from Generation Rescue (an organization promoting the idea that vaccinesasking me to donate to Congressman Bill Posey, I thought I’d take a new look at opensecrets.org and see what donations have been made lately.

Canary Party officer Jennifer Larson donates from her company (Vibrant Technologies). Another Canary Party officer is Mark Blaxill. Searching OpenSecrets for their names I find that they are (a) not donating to Darryl Issa (whom I’ll discuss below), (b) donating to Bill Posey and (c) have started donating to Justin Amash and Rick Nolan. Here are screen shots (click and click to enlarge):

larson

blaxill

And I haven’t checked to see who else is donating to these members of Congress.

Jennifer Larson recently donated $40,000 to Congressman Darryl Issa. Congressman Issa chairs the House Committee on Oversight & Government Reform. This same committee held hearings on autism, sadly wasting a lot of time on the Canary Party’s failed vaccine message. One of those hearings included Larson’s colleague at the Canary Party (Mark Blaxill) presenting testimony. Interestingly, Congressman Issa did not attend the second hearing by his own committee last year. And now the money is moving to other politicians.

Congressman Amash sits on the Committee for Government Oversight & Reform (the same one that held the hearings). But he was criticized by one of the vaccine/autism groups for arriving late and not asking questions in the recent hearing.

amash1

Rick Nolan is a member of the Congressional Autism Caucus.

Ms. Larson also has a $2,000 donation to congressional hopeful Tom Emmer (May 13, 2014).

Interestingly, Gary Kompothecras does not seem to be supporting Bill Posey this election. He has in the past (and here) and lives in the same state as Congressman Posey. Whether the lack of donations this election cycle represent some of the friction within the autism/vaccine community is unclear.

Donating to politicians is of course appropriate and legal. As is following money from special interest groups.

I hope these politicians do their own research. The vaccine/autism idea has caused a great deal of harm to the autism communities and to public health.


By Matt Carey

Call your senators, ask to bring the Autism CARES ACT to the floor

29 Jul

The bill which authorizes funding for the US federal government’s autism research effort expires this September. The re authorization bill is called the Autism CARES Act (Autism Collaboration, Accountability, Research, Education, and Support Act of 2014). The U.S. House of Representatives passed the bill and it passed the Senate HELP Committee. If it passes the Senate and gets signed by the President (pretty likely) it’s a law.

It is now waiting to be brought to the floor of the Senate for a vote.

The last time the research authorization bill was passed (the Combating Autism Reauthorization Act), the reauthorization happened at the last minute: September 30th. A new Committee to advise and plan autism research didn’t start work until the next July. This IACC met for the last time a few weeks ago, so if events go as before it will be a full year without stakeholder input on autism research. If Autism CARES passes soon, the government can start working on a new committee earlier and the delay will hopefully be shorter.

The Senate will go on recess at the end of the week (by law they have the month of August off). So now would be a good time to remind them to bring this to the floor and get it moving.

Autism Speaks has set up a handy web app to help you do this: http://bit.ly/SensCall. Click it, input a little information and it calls you back and sets up the call for you to your senators’ offices.

FaxZero lets you send 5 faxes a day from the web and they have a handy web interface to help guide you to your own (or any other senator). That is http://faxzero.com/fax_senate.php

Want to fax everyone in the senate in one fell swoop? For about $10, http://www.faxyouropinion.com/senators will send the same message to each senator. Don’t worry, they change the “Dear….” line for you.

Want to send those 5 free faxes from FaxZero and wonder who might be someone worth faxing? Well, there’s a set of groups who have been trying to block Autism CARES. These groups set up a list of targeted senators (all these groups are in the “vaccines cause autism” persuasion, 3 directly associated with Andrew Wakefield…yeah, sit back, do nothing and Andrew Wakefield will help shape U.S. autism policy for you. Now that’s a cheery thought!)

Here’s their list.  (Their staffs are very nice.  One Senator goes straight to voicemail, though).

Senator Rand Paul in Kentucky

Senator Ted Cruz in Texas

Senator Mike Lee in Utah

Senator Tom Coburn in Oklahoma

Senator Roy Blunt in Missouri

Senator Ron Johnson in Wisconsin

Senator Jim Risch in Idaho

Calls only take a minute. You can just call and say, “I’m autistic and I want Autism CARES brought to the floor. Please support it” or “I’m the parent of an autistic kid and I want Autism CARES brought to the floor. Please support it”. Or you can say “Please kill the Autism CARES Act”. It’s your Senate. Use it.


By Matt Carey

Note: I serve as a public member to the present IACC, the committee which is authorized by the Combating Autism Act. My comments here and elsewhere are always my own.

Medicaid will start paying for autism therapies

26 Jul

Medicaid will start paying for autism therapies. The news was released at the last IACC meeting and I’ve been trying to work out how best to write it since. Seems pretty straightforward, doesn’t it? Not to take anything away from the person who presented it at the meeting but after a while of hearing things like:

Those categories include: section 1905(a)(6) – services of other licensed practitioners; section 1905(a)(13)(c) – preventive services; and section 1905(a)(10)- therapy services.

I just get saturated with the 1915(a) vs 1915(i) type language.

Here’s the announcement: Clarification of Medicaid Coverage of Services to Children with Autism

Here’s one of the first paragraphs:

The federal Medicaid program may reimburse for services to address ASD through a variety of authorities. Services can be reimbursed through section 1905(a) of the Social Security Act (the Act), section 1915(i) state plan Home and Community-Based Services, section 1915(c) Home and Community-Based Services (HCBS) waiver programs and section 1115 research and demonstration programs.

See what I mean? Take from this “the federal Medicaid program may remburse for services to address ASD”

How did this come to pass? A lot of people have been pressuring medicaid for some time to provide autism services. This includes lawsuits, like this one in Florida (Judge: Florida Medicaid Must Cover Therapy for Autism).

If you listen in or watch the IACC meetings, you know that for the past few years one of the sources of pressure on Medicaid has been from IACC member Idil Abdul. I don’t know if a meeting has gone by where Idil hasn’t talked about the inequities of a system where we say we will give medical support to our disabled poor, but we withhold support for treatments related to their disability. Or, to put it simply: why should kids with private insurance get speech, OT and other services while other kids don’t under medicaid?

People often ask what is the value of the IACC and here is one of those unquantifiable benefits. Idil did what a public representative to a federal committee should do: she informed federal members of the needs of the community. Across the table from her was John O’Brien of Medicare and Medicaid Services. John is a good guy and would often patiently correct some factual errors in what Idil had said. But he had to listen to Idil.

And for those of us who know Idil, when I say “she informed federal members” you have to know that “informed” is a major understatement.

Would this shift in Medicaid policy have happened without Idil? It was a big group effort as I’ve already said. Would it have happened later without Idil? We can’t rerun the experiment.

Just to be clear–this wasn’t an effort of the IACC. This was an effort of a member of the IACC. Made possible by her being on the IACC. It’s an odd distinction, but an important one. The structure congress created of the IACC got Idil’s voice in the right place at the right time.

While on the subject of distinctions: as always, my comments are my own and they do not represent the views of the IACC.


By Matt Carey

Recent Autism Gastrointestinal research funded by NIH

24 Jul

There are many parent advocates asking for research into gastrointestinal disorders and autism. My own anecdotal observations have been that these same parent advocates are of the belief that no work is ongoing. There are a number of projects ongoing and I’ve tried in the past to make that point (What projects are being funded in autism research? Part 1: vaccines and GI issues). I found 14 projects, nearly $3M in 2010. I found 11 projects for $1.7M in 2009.

I thought it time to revisit this question. I’m using a different data source–the NIH RePORTER database. Because of that these projects are those funded by NIH. Other Federal groups can and do fund autism research. Also private organizations like Autism Speaks

Below are the projects I found for the past few years. There are projects on epidemiology, treatment and biology.

While I think that the funding agencies could do a better job informing the communities about these projects, I sincerely wish that the parent advocacy groups calling for this research would inform their members that it is going on. I am actually very curious as to why they have not done that.

MECHANISMS OF AUTONOMIC BRAINSTEM DEVELOPMENT ($243,000)

Brainstem and autonomic circuitry, though understudied in neurodevelopmental disorders, are implicated in pathophysiology and co-occurring medical conditions, such as gastrointestinal disturbances (GID). The goal of this R21 project is to fill this knowledge gap, based on significant preliminary data.

CASEIN KINASE 1 INHIBITORS FOR TREATMENT OF AUTISM $349,610

The overall goal of our program is to (1) identify CK1 [Casein Kinase 1] inhibitors suitable for development as therapeutic agents and (2) to use these agents to investigate the suitability of CK1 inhibitors for addressing specific behavioral features of the complex, multi-symptom disorder known as autism.

The CADDRE SEED studies are multiyear but I haven’t listed all the grants. So the amount is much higher than even the substantial sums noted below.

MD CADDRE: STUDY TO EXPLORE EARLY DEVELOPMENT, SEED PHASE II $91,706

MD CADDRE: STUDY TO EXPLORE EARLY DEVELOPMENT, SEED PHASE II $1,600,000

CALIFORNIA CADDRE-SEED PHASE II $1,100,000

NC CADDRE: STUDY TO EXPLORE EARLY DEVELOPMENT (SEED) PHASE II $1,100,000

COLORADO CADDRE STUDY TO EXPLORE EARLY DEVELOPMENT CADDRE_SEED II $1,100,000

PA-CADDRE: STUDY TO EXPLORE EARLY DEVELOPMENT (SEED) PHASE II $1,100,000

SEED will address hypotheses including: ASD phenotypic variation, including the pattern of clustering of core symptoms, timing of onset, cognitive status, and presence of medical and psychiatric co-morbidities; gastrointestinal features; genetic variation and interaction with environmental risk factors (GxE); infection, immune function, and autoimmunity factors; hormonal factors and maternal reproductive characteristics; and sociodemographic and lifestyle factors.

INVESTIGATING THE GUT MICROBIOME FOR NOVEL THERAPIES AND DIAGNOSTICS FOR AUTISM $558,136 (also funded in 2013 for $558,136)

Based on compelling preliminary evidence, this project aims to explore the potential connection between GI barrier defects and altered behavior in preclinical models of autism. Our long-term goal is to explore possible serum biomarkers for ASD diagnosis, and potentially develop a novel probiotic therapy for at least a subset of children with ASD with GI issues.

2013 projects

TREATMENT OF MEDICAL CONDITIONS AMONG INDIVIDUALS WITH AUTISM SPECTRUM DISORDERS $488,568 (also, $339,591 in 2012, $264,726 in 2011, $578,006 in 2010, $535,209 in 2009, and $465,840 in 2008)

The life-long impairments in communication and social function are often complicated by the presence of medical comorbidities, including epilepsy, (and epileptiform discharges), gastrointestinal disturbances and sleep disorders.

REGULATION OF GASTROINTESTINAL NEUROMUSCULAR FUNCTION BY NIBP/NFKB SIGNALING $320,576 (and 2012 $343,747)

The proposed research is relevant to public health because the discovery of a novel function of NIBP/NFkB signaling in enteric neurons and glial cells is ultimately expected to increase the understanding of the pathogenesis of gastrointestinal diseases. It also shed light on the therapeutics for gastrointestinal inflammation and functional disorders.

ARE AUTISM SPECTRUM DISORDERS ASSOCIATED WITH LEAKY-GUT AT AN EARLY CRITIACAL PER $292,221 (and 2012 $302,820, and 2011 $302,820)

This project seeks to answer fundamental questions about the connection between early development of gastrointestinal (GI) problems (constipation, diarrhea, vomiting, etc.) and autism spectrum disorders (ASD)

From 2011

NEUROIMMUNOLOGIC INVESTIGATIONS OF AUTISM SPECTRUM DISORDERS (ASD) $264,726

A number of anecdotal reports have linked autism with gastrointestinal (GI) dysfunction; most notable among these are reports that autism is associated with “leaky gut” syndrome. Microbial translocation (MT) is the process by which bacteria or microbial byproducts permeate through the wall of the GI Tract (or other abnormally porous mucosal barriers) into the bloodstream. The microbial byproducts would then stimulate the immune system, which could have secondary effects on CNS functioning, or the byproducts could have a direct neurotoxic effect. We conducted assays of MT products in children with autism (from blood and CSF), as well as typically developing children (blood samples only).

and

Our ongoing phenotyping studies will be used to identify a cohort of children with autism who also have significant gastrointestinal symptoms in order to address this potentially important subgroup of patients.

A PRIMATE MODEL OF GUT, IMMUNE, AND CNS RESPONSE TO CHILDHOOD VACCINES $156,634


By Matt Carey

Environmental risk factor related research funded by the NIH in 2014

18 Jul

There is a great interest from some in the autism parent community for environmental risk factor research. There is also a belief that this work is not being performed. While the amount of environmental risk factor research is less than the IACC has advised be performed (a point I made in my first IACC meeting), the amount of attention to environmental risk factors has been increasing.

Given this, I thought it would be interesting to see what projects and how many have been funded by the NIH this year (I believe they work on a fiscal year ending Sept. 30, so we have much but not all of the 2014 information available). I used the NIH Reporter website and did a very unscientific search for autism and environment, autism and risk and similar searches.

Below are the funded projects I’ve found. Some are directly on topic. Some more peripherally. And I know I’ve left some out (some on purpose–like Zebrafish studies–and some I missed). I think there are 33 projects below. Something like $20M. Keep in mind, not all Federally funded autism research goes through the NIH and not all autism research is Federally funded.

As I like to point out in these articles, you won’t find this information on the websites of the autism organizations which claim to be focused on environmental risk factor research. In fact, you are more likely to find statements that there is no such research ongoing or it is being blocked.

Here’s a quote from Sallie Bernard of SafeMinds, a quote that was repeated by Congressman Posey at a hearing held last year on autism:

“By ignoring the environmental component to autism, the government and scientific community have made a massive strategic error, wasting enormous amounts of money and time in mostly fruitless genetics-only research that has not helped us stop new cases of autism or helped people living with severe autism”

I think one can argue that more investment should be made. But “ignoring”? I realize that very few people will go to NIH Reporter and search for these projects. But I expect accuracy from those claiming to lead the autism community and acting as though they know the research landscape on autism and the environment.

I was going to ignore the “fruitless” comment above, but I just can’t. I sat on the subgroup writing the IACC’s updates on risk factor research in the Strategic Plan (question 3). As part of that I had the honor of working with some excellent researchers, both on the genetics and the environmental side. If I may be so bold as to relate what I heard in those discussions: I never heard these researchers claim that the genetics research was “fruitless”. Quite the opposite. Was there a strong sense that environmental risk factor research could be better funded? That was certainly my take away. And I agree. My predecessors on the IACC wrote a Plan that called for more research in this area.

That said, I am reminded of my favorite old saying

There’s more politics in science than science in politics.

Except quite frankly, I don’t think the message that environmental risk factor research is being “ignored” and “fruitless” has anything to do with science. It’s just politics.

Here’s that list of funded research (in no particular order):

POPULATION-BASED AUTISM GENETICS & ENVIRONMENT STUDY $655,813

PROSPECTIVE EVALUATION OF AIR POLLUTION, COGNITION, AND AUTISM FROM BIRTH ONWARD $545,679

PESTICIDE EXPOSURE AND CHILDHOOD AUTISM $184,503

PRENATAL TIMING OF HEAVY METAL EXPOSURES FROM AUTISTIC AND NON-AUTISTIC CHILDREN $231,692

MD CADDRE: STUDY TO EXPLORE EARLY DEVELOPMENT, SEED PHASE II $91,706

ANTECEDANTS SEQUELAE OF CHILDHOOD ONSET DISEASE $432,000

MITOCHONDRIAL DYSFUNCTION DUE TO ABERRANT MTOR-REGULATED MITOPHAGY IN AUTISM $183,568

PRENATAL AND NEONATAL BIOLOGIC MARKERS FOR AUTISM $784,863

AUTISM RISK, PRENATAL ENVIRONMENTAL EXPOSURES, AND PATHOPHYSIOLOGIC MARKERS $1,793,611

THE ROLES OF ENVIRONMENTAL RISKS AND GEX IN INCREASING ASD PREVALENCE $537,756

METHYLOMIC AND GENOMIC IMPACTS OF ORGANIC POLLUTANTS IN DUP15Q SYNDROME $341,921

EPIDEMIOLOGICAL RESEARCH ON AUTISM IN JAMAICA – PHASE II $564,795

EARLY PREGNANCY STRESS PROGRAMMING OF OFFSPRING EMOTIONALITY $396,000

GENOME-WIDE IDENTIFICATION OF VARIANTS AFFECTING EARLY HUMAN BRAIN DEVELOPMENT $413,630

EPIGENETIC AND TRANSCRIPTIONAL DYSREGULATION IN AUTISM SPECTRUM DISORDER $531,208

EPIGENETIC INFLUENCE ON THYROID HORMONE ACTION IN THE BRAIN AND ON BEHAVIOR $391,250

MATERNAL ADVERSITY AND EPIGENETIC AND BEHAVIORAL PROGRAMMING ACROSS GENERATIONS $583,246

EXPLORING INTERACTIONS BETWEEN FOLATE AND ENVIRONMENTAL RISK FACTORS FOR AUTISM $118,717

MD CADDRE: STUDY TO EXPLORE EARLY DEVELOPMENT, SEED PHASE II $1,600,000

CALIFORNIA CADDRE-SEED PHASE II $1,100,000

NC CADDRE: STUDY TO EXPLORE EARLY DEVELOPMENT (SEED) PHASE II $1,100,000

COLORADO CADDRE STUDY TO EXPLORE EARLY DEVELOPMENT CADDRE_SEED II $1,100,000

PA-CADDRE: STUDY TO EXPLORE EARLY DEVELOPMENT (SEED) PHASE II $1,100,000

SEX-DEPENDENT MICROGLIAL COLONIZATION AND VULNERABILITY TO A NEONATAL INFECTION $272,270

PRENATAL SEX STEROIDS, BISPHENOL A, PHTHALATES, AND SEXUALLY DIMORPHIC BEHAVIORS $244,996

ENVIRONMENT, IMPRINTING, AND NEURODEVELOPMENT $799,726

IN UTERO ANTIDEPRESSANT EXPOSURES AND RISK FOR AUTISM $348,000

SEX DIFFERENCES IN DEVELOPING MICROGLIA: IMPLICATIONS FOR SYNAPTIC PRUNING $392,500

ARE ENDOCRINE DISRUPTING COMPOUNDS ENVIRONMENTAL RISK FACTORS FOR AUTISM? $237,750

THE EFFECT OF MATERNAL OBESITY AND INFLAMMATION ON NEURONAL AND MICROGLIAL FUNCTI $78,250

TRANSCRIPTIONAL AND EPIGENETIC SIGNATURES OF HUMAN BRAIN DEVELOPMENT AND AUTISM $1,542,279

PROJECT 2: THE IMPACT OF ASSISTED REPRODUCTIVE TECHNOLOGIES ON THE LONG-TERM EPI $266,000

PRENATAL FACTORS AND RISK OF AUTISM IN A FINNISH NATIONAL BIRTH COHORT $579,293

One last note: I don’t see funding for the EARLI network. That strikes me as a shame.


By Matt Carey

Note: I serve as a public member to the IACC but all statements are my own.

More of that vaccine/autism research that doesn’t exist

17 Jul

There are some parents who want research on vaccines and autism. I may not agree that this is the best way to spend our limited resources, but there’s no denying that this group exists and is very vocal. One thing that surprises me is that these parents appear to be unaware of vaccine/autism research that is ongoing. Not just the studies that come out that show us over and over again that autism risk is not increased by vaccines. But other projects. Biology. Studies on regression. And more. I pointed out recently that using NIH Reporter, one can find a number of projects on autism and vaccines or autism and mercury.

But NIH is not the only Federal agency funding autism research. And there are private funders as well. As I mentioned in my previous article, another place to look for funded research projects is the IACC/OARC Autism Spectrum Disorder Research Portfolio Analysis Web Tool as this includes work the various groups represented on the IACC–both Federal and Private. Unfortunately, this tool only has 2008, 2009 and 2010 projects (had the GAO not required OARC to provide a lot of information last year, perhaps this tool would be updated by now. But such is the government.) But, even with this limitation in years, let’s see what projects come up with searches for vaccines or mercury. I’ll give the titles first, and then the abstracts for these projects below.

It’s understandable that parent advocates are not aware of these projects. I’ve written about this before (“What projects are being funded in autism research? Part 1: vaccines and GI issues”) but I think it’s safe to say that parents who believe in the vaccine/autism connection do not frequent Left Brain/Right Brain. There are places on the web that carry that message (for example, the Age of Autism blog and the sites of the organizations that sponsor it). They aren’t telling their constituencies about the ongoing research efforts. As an example, as I was finishing this article, SafeMinds came out with a letter discussing how no work is being performed on vaccines and autism.

Again, this list is only for 2008, 2009 and 2010. More recent projects from NIH were discussed here.

Vulnerability phenotypes and susceptibility to environmental toxicants: From organism to mechanism (funded by Autism Speaks)

Evaluation of the immune and physiologic response in children with autism following immune challenge (funded by Autism Speaks)

Vaccination with regression study (funded by Autism Speaks)

Vaccine safety datalink thimerosol and autism study (Federally Funded)

Analysis of developmental interactions between reelin haploinsufficiency, male sex, and mercury exposure (Funded by Autism Speaks)

MeHG stimulates antiapoptotic signaling in stem cells (Federally funded: DoD)

Etiology of autism risk involving MET gene and the environment (Funded by Autism Speaks)

Epidemiological research on autism in Jamaica (Federally Funded, NIH)

investigation on the potential harmful effects of mercury in the nonhuman primate (Funded by SafeMinds)

Investigating the effect of mercury on ASD, AD and ASD regression (Funded by SafeMinds)

The effect of mercury and neuropeptide triggers on human mast cell release of neurotoxic molecules (Funded by SafeMinds)

Does mercury and neurotension induce mitochondrial DNA release from human mast cells and contribute to auto-immunity in ASD? (Funded by SafeMinds)

Toxicant-induced autism and mitochondrial modulation of nuclear gene expression (Federally Funded: DoD)

Below are the abstracts for these research projects.

Vulnerability phenotypes and susceptibility to environmental toxicants: From organism to mechanism (funded by Autism Speaks)

One hypothesis regarding the association between genetic changes, environmental factors and autism is that many mutations or polymorphisms make the organism more vulnerable to later exposure in some individuals. Called the “vulnerability phenotype”, the Noble lab hypothesizes that one potential unifying theme of the vulnerability phenotype of children with ASD is that they are more oxidized. This elevated oxidation state has been shown to be sufficient to cause dramatic changes in cellular function. In this project, Dr. Noble will test the hypotheses that genetically-based differences in oxidative status are associated with differences in vulnerability to physiological stressors in vitro and in vivo, with even greater increases in vulnerability to combinations of physiological stressors. Specifically, thimerosal and other vaccine adjuvants will be studied. The second part of the study will determine if these effects on a novel regulatory pathway called redox/Fyn/c-Cbl is a necessary mechanistic convergence for increases in vulnerability caused by a more oxidized metabolic status. These results will provide a better understanding of the biochemical effects and mechanisms of possible toxicity of vaccines and vaccine additives. What this means for people with autism: These studies will initially focus on the combination of vaccine additives, but then examine whether a background genetic vulnerability phenotype affects the response to these additives. The results would provide new targets for intervention against the adverse effects of increased oxidative status in children with autism.


Evaluation of the immune and physiologic response in children with autism following immune challenge
(funded by Autism Speaks)

The overall goal of this proposal is to address immune function in children with autism, including the response to vaccine challenge, and how that relates to behavior. Evidence suggests that autism is associated in some cases with altered immune function, but the response of the immune system in children with autism to specific immune challenges, such as vaccines, has not been investigated directly. While it has been reported that some children with autism respond poorly following vaccination with symptoms ranging from rash, diarrhea, irritability, seizures, and loss of skills, no careful, thorough approach has been undertaken to fully characterize this issue, both at the biology and behavior level. We propose to use our current CHARGE (Childhood Autism Risks from Genetics and the Environment) and Autism Phenome Project (APP) study population to address this critical issue. The overall approach would include an examination of the immune response to both viral and bacterial vaccines in children with autism, as compared to typically developing age-matched controls, in real time following vaccination at 5 years of age. Vaccines have advantages for directly studying the immune response as they provide a known, scheduled immune challenge, whose dose is well characterized – making it possible to collect and interpret immune response data at the time that it occurs. Therefore, we think that exposure to an immune challenge with vaccine would result in an increase in inflammation compared to controls in a subpopulation of children with autism. However, we also anticipate that some children will respond to vaccine challenge differently, depending on form of the vaccine, i.e. viral vs. bacterial. Thus, we propose to address the issue of immune function in children with autism through a careful analysis of the immune system, medical and mitochondrial issues, and behavioral response to both viral and bacterial vaccines.

Vaccination with regression study (funded by Autism Speaks)

A major challenge to studying autism with a suspected vaccine-related regression is identifying children with acute regressive-type symptoms following MMR vaccination; there are no specific codes, tests, or procedures that identify this occurrence with a high degree of specificity. This study will explore the Kaiser Permanente electronic databases to ascertain whether we can identify children with regressive type autism and identify the timing of the regression in relation to the period directly following MMR vaccination. In order to see if identification of regressive autism from medical records is possible, the investigators will attempt to identify children vaccinated with MMR who then abruptly undergo a ‘cluster’ of visits, tests, and/or procedures in the time period directly following vaccination. The researchers feel that there may be a number of children who receive a diagnosis (such as ‘prolonged crying’) in the emergency department on the day after vaccination, followed shortly thereafter (1-2 days later) by another set of diagnoses (such as ‘fever’ & ‘irritability’) in the pediatric office or other outpatient department, and then receive either diagnostic or laboratory tests indicating (at least) a moderate degree of severity of concern, such as CT scans, metabolic testing, or referral to neurology. If this study is successful in using medical databases to identify a specific group of children with demonstrable autism-related regression that clearly follows vaccination, it may point to the feasibility of further studies concentrating on this specific population.

Vaccine safety datalink thimerosol and autism study (Federally Funded)

The Thimerosal and Autism Study is a case-control study conducted in three U.S. managed care organizations (MCOs). Data collection began in 2005 and took three years to complete. In this study, children who were diagnosed with autism were matched with control children. The autism diagnosis of the case samples was confirmed by a standardized clinical assessment protocol. Vaccination histories and information on other potential confounding factors were confirmed by reviewing the medical records for all children. In addition, the mothers of both cases and matched controls were interviewed.

Analysis of developmental interactions between reelin haploinsufficiency, male sex, and mercury exposure (Funded by Autism Speaks)

This project will investigate the role of three separate factors in an animal model of autism spectrum disorder: a) genetic susceptibility, b) hormonal environment, and c) possible environmental triggers. A mouse model with a mutation of the reelin gene, implicated in autism spectrum disorders, will be studied after exposure to methyl and ethyl mercury. Both behaviors and neuropathological endpoints will be explored. Finally, the role of endogenous sex hormones will be examined by eliminating the testosterone “surge” around the time of puberty. The individual effects of each will be examined, as well as the interaction of the three components (genetic liability, environmental exposure, hormonal influences) to determine gene x environment interactions. What this means for people with autism: This study will use a unique design to study multiple factors in the etiology of autism spectrum disorder in a mouse model, isolating and combining factors which previously have been implicated in the pathophysiology and behavioral phenotype.

MeHG stimulates antiapoptotic signaling in stem cells (Federally funded: DoD)

This project is a study of the antiapoptotic effect of low concentration of methly mercury and cadmium in cells.

Etiology of autism risk involving MET gene and the environment (Funded by Autism Speaks)

Two independent lines of evidence indicate that the maternal immune system and a functional genetic variant contribute to autism spectrum disorder (ASD) risk. Here, the Van De Water lab will partner with scientists at Vanderbilt University to examine whether these two seemingly unrelated contributions may converge to define a unique ASD susceptibility. Preliminary evidence collected by the Van De Water lab indicates an association between the Mesenchymal epithelial transition factor (MET) gene ‘C’ type, which reduces MET protein expression, and the presence of specific maternal anti-fetal brain autoantibodies. This relationship suggests that this as a pathway for production of the maternal autoantibodies, leading to a gene x environment interaction underlying ASD susceptibility. The next line of experiments will examine the relationship in an even larger sample and assess the functional effect of the MET gene polymorphism on immune cell activity as well as further examine the impact of environmental toxins (including ethyl mercury) on the gene expression-dependent function of maternal immune cells.

Epidemiological research on autism in Jamaica (Federally Funded, NIH)

The prevalence of autism spectrum disorders (ASD) appears to be on the rise in developed countries and has become a serious public health concern. In most developing countries, however, the nature and prevalence of factors associated with ASDs are unknown. The long term goal of this planning project is to develop capacity for conducting large scale population-based ASD studies in Jamaica. First, the diagnostic criteria used in Jamaica and the United States will be compared. Then, questionnaires regarding the demographic and socioeconomic position, occupation, and drinking habits of each child’s parents will be used, and information will be gathered about family history of developmental disorders, family size, birth order of the affected child, and whether the child is taking any medications. An age and sex matched case-control study, including a dietary questionnaire, will also be conducted to investigate whether environmental exposures to mercury, lead, arsenic, and cadmium play a role in autism. Blood and saliva samples will be collected to determine if any DNA polymorphisms that might affect interactions with heavy metals are present in children with ASD. New knowledge of potential environmental risk factors for ASD may arise from this research, thereby reducing physical, psychological, and economic burdens on the child, family, and society and helping parents make decisions about avoiding exposure to environmental contaminants.

An investigation on the potential harmful effects of mercury in the nonhuman primate (Funded by SafeMinds)

An investigation into the effect of mercury on neurons, astrocytes, and microglia on the central nervous system of the nonhuman primate.

Investigating the effect of mercury on ASD, AD and ASD regression (Funded by SafeMinds)

An investigation into the influences of demographics and environmental variables in the development of neurodevelopmental problems such as AD, ASD, and ASD-regression

The effect of mercury and neuropeptide triggers on human mast cell release of neurotoxic molecules (Funded by SafeMinds)

An investigation to determine the pro-inflammatory effects of mitochondrial DNA with and without mast cell triggers.

Does mercury and neurotension induce mitochondrial DNA release from human mast cells and contribute to auto-immunity in ASD? (Funded by SafeMinds)

Further investigation into preliminary data that neurotensin (NT) stimulates mast cell activation and that NT is elevated in young children with autism spectrum disorder.

Toxicant-induced autism and mitochondrial modulation of nuclear gene expression (Federally Funded: DoD)

Autism has been associated with epigenetic changes: Tiny chemical tags in the regulatory regions of genes that affect how genes express themselves by turning them on or off. One gene often decreased in expression in the brain tissue of autistic individuals is MECP2, a gene that governs the expression of genes crucial to brain development. Exposure to environmental pollutants is also thought to play a role in autism. These two phenomena both involve a small cellular organ called mitochondria. The suspect environmental pollutants are toxic to mitochondria, which play a critical role in epigenetics: Pollution exposure can lower the amount of mitochondrial DNA (mtDNA) in a cell, causing an increase in placement of epigenetic tags by DNMT1 that leads to gene silencing. We hypothesize that exposure during pregnancy to pollutants toxic to mitochondria causes a decrease in mtDNA copy number and increased placement of epigenetic tags by DNMT1 on key developmental genes, affecting pathways that have direct roles in the development of autism. We will expose mice, during pregnancy, to selected toxicants and evaluate adult behavior and associated biochemical changes in brain tissue. Valproic acid will be used as a positive control, with saline as a negative control. The environmental pollutants lead, arsenic, cadmium, manganese, mercury, and permethrin will be investigated for their potential to induce autistic behavior changes. Brain tissue will then be used for molecular studies of mtDNA copy number, expression of DNMT1, and alterations to the epigenome on both a genomewide and gene-specific level.


By Matt Carey

Note: I serve as a public member to the IACC. My views here and elsewhere are my own, not those of the Committee.

Has the National Autism Assocation left the Autism Policy Reform Coalition?

11 Jul

There’s a group working to change the law reauthorizing Federal autism research. They haven’t been very successful so far and, frankly, that’s OK with me. That group, or coalition, calls itself the Autism Policy Reform Coalition. The coalition’s member groups are small and focused on the idea that vaccines cause autism.

The Coalition has changed their website. The URL, the design and, apparently, the membership has changed. Here’s a bit of a screenshot of the original page at autismpolicy.org (click to enlarge):

aprc-orig

The new website is at autismpolicy.net. Yep, .org to .net. I guess there’s a reason for that but let’s look at bigger changes. Namely, the member organizations.

On AutismPolicy.net, we see the member organizations are:

The Thinking Mom’s Revolution
SafeMinds
Defending Academic Integrity and Research Foundation (D.A.I.R).
Generation Rescue
Talk About Curing Autism
The Autism Trust
Autism Is Medical

Perhaps I missed it but the National Autism Association isn’t on the member list now as far as I can see. Perhaps it will show up in a future edit of the page. Perhaps the NAA are no longer a part of the Coalition. If they left, it does beg the question of “why?”

I’ll note that The Autism Trust (a group with Andrew Wakefield involved) has been added to the APRC though. Not in my mind a step forward.

All these groups in the APRC have some focus on vaccines. Some are primarily focused on vaccines. The Autism Trust, Autism Is Medical and D.A.I.R. are all associated with Andrew Wakefield (the doctor who more than anyone promoted the idea that the MMR vaccine causes autism). As far as I can tell, the only group with dues paying members is the NAA, which is now absent from the list.

I wouldn’t be surprised if no one remembers that 4 years ago there was another coalition–the Combating Autism Act Reauthorization Coalition. Their website disappeared for a while but it’s back up now. I wonder if all the member organizations of that Coaltion were asked if they still wanted to participate. I’ll note that back in 2010, this coalition was willing to openly admit that vaccines were part of their platform. The new Autism Policy Reform Coalition does not mention vaccines, even though all the member groups believe in vaccine causation.

So, what do we have now in the Autism Policy Reform Coalition? A small and possibly shrinking group of vaccine-focused parent groups that won’t use the word vaccine? If the APRC has lost the NAA, that’s a big step back. The NAA is one of the larger groups and one with a mission that is no longer so focused on vaccines. It’s less easy to hide the vaccine connection without them.


By Matt Carey

HHS Announces Appointment of New Public Members to the Interagency Autism Coordinating Committee

2 Jul

The U.S. Interagency Autism Coordinating Committee (IACC) will have two new members when it meets next week. The press release is below. The new members are Wendy Chung from Simons Foundation and Robert Ring from Autism Speaks. The Simons Foundation is the largest non-governmental funder of autism research and previously had a member on the IACC (Dennis Choi). My understanding is that Mr. Choi took a position working with a foreign government and that conflict required him to resign the IACC. Geri Dawson is still on the IACC and started this session working for Autism Speaks. Ms. Dawson has since left Autism Speaks.

For Immediate Release
July 2, 2014

HHS Announces Appointment of New Public Members to the Interagency Autism Coordinating Committee

The Department of Health and Human Services today announced the appointments of Wendy Chung, M.D., Ph.D., and Robert Ring, Ph.D., as public members of the Interagency Autism Coordinating Committee (IACC), a federal advisory Committee composed of federal agency officials and appointed community stakeholders that provides coordination and a forum for public input on issues related to autism spectrum disorder (ASD). Prior to her departure, former HHS Secretary Kathleen Sebelius appointed Dr. Chung, Director of Clinical Research for the Simons Foundation Autism Research Initiative (SFARI), and Dr. Ring, Chief Science Officer of Autism Speaks, to join the IACC in order to provide additional perspectives and expertise to the Committee. Dr. Chung and Dr. Ring serve as leaders within the two organizations that are the largest private funders of autism research in the United States. Both organizations were previously represented on the Committee by individuals who were appointed in 2012, but who have since left or changed affiliation.

Dr. Insel, Chair of the IACC and Director of the National Institute of Mental Health, welcomed the expertise and dedication that Dr. Chung and Dr. Ring bring to the IACC. “Both Dr. Ring and Dr. Chung will be important additions to the Committee, given the depth of their scientific and clinical experience, and their dedication to improving the lives of people on the autism spectrum,” he said.

Dr. Chung, in addition to directing clinical research at SFARI, served as a member of SFARI’s scientific advisory board. Dr. Chung is also the Herbert Irving Associate Professor of Pediatrics and Medicine and Director of Clinical Genetics at Columbia University College of Physicians and Surgeons, where she is the principal investigator for the Simons Variation in Individuals Project (Simons VIP), funded by the Simons Foundation.

Dr. Ring, who has been the Chief Science Officer of Autism Speaks since 2013, also serves as the Chairman of the Board of Delivering Scientific Innovation for Autism (DELSIA), the venture philanthropy arm of Autism Speaks, and leads Autism Speaks’ collaboration with the Simons Foundation to launch the Autism BrainNet, a privately-funded multisite brain banking effort focused on supporting autism research. Dr. Ring previously served as Autism Speaks’ Vice President of Translational Research. He holds adjunct faculty appointments in the Departments of Psychiatry at Mount Sinai School of Medicine and Pharmacology and Physiology at Drexel University College of Medicine. Prior to his work at Autism Speaks, Dr. Ring served as Senior Director and Head of the Autism Research Unit at Pfizer Worldwide Research and Development and worked in the area of psychiatric drug discovery at Wyeth Research.

These two new members of the Committee will serve for the remaining months of IACC activity under the Combating Autism Reauthorization Act of 2011, which will expire on September 30, 2014. If reauthorized, the IACC will be open for nominations of new potential public members in late 2014.


By Matt Carey

Autism CARES Act passes Senate HELP Committee

26 Jun

The U.S. Senate Health, Education, Labor and Pensions (HELP) Committee met today to review the proposed Autism CARES Act. According to The Hill, the bill passed the committee and will move on to the full Senate for vote (Senate panel advances autism research bill)

The Senate Health, Education, Labor and Pensions (HELP) Committee quickly approved legislation Wednesday to reauthorize federal autism research and services for five years.

The bipartisan bill, which now advances to the Senate floor, is identical to a measure passed by the House on Tuesday night and has a strong likelihood of becoming law this summer.

The next steps are–Senate vote, reconciling any differences between the Senate and House versions, and Presidential Signature.

Here’s the US Legislative process:


By Matt Carey

note: I serve as a public member to the IACC (which is part of the legislation discussed above) but all opinions here and elsewhere are my own.

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