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Tax form for American Citizens for Health Choice

1 Aug

With the recent article on the financial documents for the Canary Party, it’s worth noting that the same team behind the Canary Party has a charity “American Citizens For Health Choice”. They have a site, A while back I discussed them in the comments for a Canary Party article. As a charity they file tax forms (form 990) which are made public. Here’s their 2012 form. They had $74,000 in revenue and $60,638 in expenses.

So, don’t think that just because money isn’t going to the Canary Party that this team is backing off.

Of their revenue, $4,440 is listed as “public support” which suggests to this observer that the remaining was fronted by their officers. Ms. Larson and Mr. Blaxill contributed large sums to their Canary Party project (and to politicians) in the past.

As with the Canary Party, travel is a large chunk of expenses. Not as much detail as with the Canary Party, but they spent about $12k on travel and another $17k on expo/trade shows.

By Matt Carey

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

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 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):



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.


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

The Age of Autism wants people to donate to Congressman Bill Posey…because “money=influence”

30 Jul

Here’s a screenshot from the Age of Autism Facebook page:


click to enlarge.

I was going to make some comments, but it says a lot just on it’s own.

By Matt Carey

No, autism in Scandinavia isn’t rare and “high functioning”

30 Jul

There’s a belief I’ve seen recently online claiming that studies from Scandinavia don’t relate to the U.S. because autism is rare there (3 in 10,000) and that autism in Scandinavia is primarily “high functioning”, Asperger syndrome or the like. I won’t link to the discussions as I’ve tried to avoid using the blog to continue discussions found online elsewhere.

I don’t know where this myth originated. But here’s a recent study from Sweden and this result (1.15% autism prevalence, intellectual disability in 42.6%)

The 2007 year prevalence of ASD in all children and young people was 11.5 per 1,000 (95% confidence interval 11.2–11.8), with a co-morbid intellectual disability recorded in 42.6% (41.0–44.2) of cases. We found 96.0% (92.0–98.4) of reviewed case-notes being consistent with a diagnosis of ASD, and confirmed ASD in 85.2% (66.2–95.8) of affected twins.

Yep. Prevalence comparable to the US and with a similar level of intellectual disability.

While we are at it–the prevalence is also pretty much flat for ages 9-18 (kids born from 1989 to 1998) as well.


As noted before, thimerosal exposure from infant vaccines was low in Sweden before the 1990’s and was reduced to zero in the early 1990’s. So, for few people still clinging to the “thimerosal epidemic” idea, here’s another nail to add to that coffin.

Another recent study shows prevalence in Scandinavian countries to be between .5 and 1 per 1,000.

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: 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

Want to fax everyone in the senate in one fell swoop? For about $10, 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.

Locking autistics in a filthy basement room can never be called “the least bad solution”

28 Jul

The Washington Post has a series of articles about a pair of twin autistic adults who were found locked in a basement room. Here are the first two:

Rockville, Md., couple charged with abusing twin 22-year-old autistic sons


Rockville autistic twins who were locked in room are moved

From that second article:

The autistic twins who spent nights locked inside a urine-stained room in their parents’ basement have been safely placed in another home under the oversight of social workers, Montgomery County authorities said Tuesday.

The young men, 22 years old, also have undergone medical checkups, which didn’t find signs of further abuse, police said.

Their parents — John and Janice Land — have each been charged with two counts of abuse of vulnerable adults and two counts of false imprisonment. It appears that the authorities’ case against them rests on the conditions that left the two men inside a filthy, dark room with only an old comforter to sleep on. Neither man can communicate verbally. The doors to the room were bolted from the outside, and the basement also was blocked in places by plywood, according to police accounts and fire inspection reports.

“This case is unacceptable,” said Laurie Reyes, a Montgomery police officier who works with autism families. “There are other measures that can be put in place.”

She said that the conditions for the twins were the worst she had ever heard of in the county.

“the worst she had ever heard of in the county”

Not “just” locked in the basement. Squalor. Filth. According to a later article, the house has been condemned.

This inspired the Post and writer Dan Morse to write another article: Coping with adult children’s autism, parents may face ‘least bad’ decisions

Mr. Morse, I appreciate what you are trying to do. We absolutely need better supports for our autistic adults. But framing this story around the actions of these parents is bad. Really bad. I am at a loss for words in describing just how bad.

I’ll pull one sentence out.

But John Land’s father — John Land III — has said the criminal allegations are overstated given the challenge the twins presented.

If you are going to write that, what about a loud rebuttal? How does being disabled make it non criminal to hold these twins in a squalid prison cell? I frankly think the criminal charges are understated, much as this rebuke is extremely understated.

This sort of abuse can never be the “least bad” choice. Not even close.

Please, find a way to write about the challenges faced–from the perspective of the autistics. Find a way to write about autistics as equals, humans who deserve support because we, the non disabled, should live up to our responsibility.

By Matt Carey

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.


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.


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.







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.


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.


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.


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


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).


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.


By Matt Carey

NYC’s Korean Community Launches Autism Hotline

24 Jul

Ask someone about autism and Korea and, if you get any answer at all, you will likely hear about the whole population prevalence study that showed 2.64%. What about autism in Korean communities outside Korea? The U.S. has large Korean populations, especially in Los Angeles and New York. And these communities are terribly underserved.

Autism Speaks, George Washington University and the University of Pennsylvania have teamed up with the Korean Community Services (KCS) of Metropolitan New York to create a hotline for autism information.

Two people I respect greatly are involved with this: David Mandel (U. Penn) and Richard Grinker (GWU).


I’ve copied the part of the Autism Speaks article (the Korean part) below, in the hopes that adding more information in Korean to search engines will result in more people finding the information.

뉴욕한인봉사센터 (KCS)가 오티즘스픽스, 펜실베니아 대학교 정신건강정책서비스 연구소, 그리고 조지워싱턴 대학교의 지원 하에 KCS키즈라인 서비스를 시작하였습니다. 이 프로젝트를 위한 오티즘스픽스의 지원은 블룸버그 가족 재단의 기금을 통하여 이루어졌습니다.

KCS 키즈라인은 자폐(Autism Spectrum Disorder) 또는 발달지체와 관련된 걱정거리를 안고 있는 한인 가족들에게 필요한 정보를 제공하고, 자폐 관련 서비스로의 연결을 돕기 위한 한국어 전화서비스입니다.

오티즘스픽스 공공보건부 어시스턴트 디렉터인 에이미 대니얼스는, “KCS 키즈라인은 한인 지역사회 내 자폐에 관한 인식을 높이고 정보를 제공하기 위한 이전의 노력들에서 한 단계 더 나아가, 자녀들에 대한 우려를 가진 가족들에게 꼭 필요한 정보를 즉각적으로 제공하게 됩니다. 우리는 이 서비스를 통해 가족들이 필요로 하는 도움을 좀더 직접적이고 시기 적절하게 받을 수 있도록 돕기를 희망합니다.” 라고 말했습니다.

미주 아시안 연합 인구조사 센터 (The Asian-American Federation Census Information Center)에 의하면, 한국인은 뉴욕시에서3번째로 큰 아시안 그룹으로 현재 10만명 이상의 한인들이 뉴욕에 거주하고 있습니다. 뉴욕시 교육부는 아시안 학생이 전체 뉴욕시 학생의 16%를 차지하고 있는 것에 비해, 자폐 진단을 받은 아동들 중 아시안은 단 8% 뿐이라고 밝혔습니다. 이러한 수치의 차이는 한인사회 내에서도 자폐 진단이 제대로 이루어지지 않고 있을 가능성을 시사합니다. 오티즘스픽스 재단의 연구비 지원 하에 2011년 한국에서 실시된 자폐 발생률에 관한 연구 결과에서도 비슷한 결과를 볼 수 있었는데, 자폐의 범주 안에 있는 아동 중 2/3가 사전에 진단을 받지 못하였고 적합한 서비스 또한 받지 못했던 것으로 나타났습니다.

한인사회 내에서 자폐 진단이 잘 이루어 지지 않는 이유는 자폐에 대한 인식 부족, 사회적 낙인, 그리고 문화를 고려한 서비스의 부족으로 보이며, 언어장벽 또한 서비스를 이용하는 데에 있어 장애요소가 됩니다. KCS 키즈라인의 목표는 뉴욕시 내 자폐를 가진 한인 어린이들이 빠른 시간 내에 적절한 서비스를 받도록 하는 데 중점을 두고, 그 부모와 가족들을 좀더 효과적으로 지원하며, 궁극적으로는 한인사회의 자폐에 대한 인식을 증진시키고, 자폐 관련 자료들을 많은 사람들이 쉽게 이용할 수 있도록 돕는 데 있습니다.

KCS 키즈라인은 아동의 연령에 제한을 두지 않으며, 주된 대상은 출생 이후 3세까지의 자폐 및 발달지체의 증상을 보이는 아이의 부모들입니다. 부모님이나 보호자들은 전화, 이메일, 또는 방문을 통해 정보를 받을 수 있습니다. 또한, 오티즘스픽스 재단의 지원을 통해 한국어로 번역된 100-Day Toolkit (자폐 진단 후 첫 100일 동안 아동을 케어하기 위한 정보) 및 여러 가지 자폐에 관한 자료들을 오티즘스픽스 웹사이트에서 무료로 다운로드 받을 수도 있습니다: KCS는 자폐와 관련된 서비스 자료들을 꾸준히 모으고, 더 높은 연령대의 아동들과 그 가족들 또한 도움을 받을 수 있도록 뉴욕시 내의 학교 및 커뮤니티 기관들과 지속적으로 연계함으로써, 더 많은 한인 가족들이 필요로 하는 서비스를 제공받을 수 있도록 노력할 것입니다.

By Matt Carey


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