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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

SFARI looks back at 2012 autism research

29 Dec

SFARI, the Simons Foundation Autism Research Initiative, hosts one of the best autism research focused blogs there is. The Simons Foundation is the largest private funder of autism research.

SFARI has a list of 10 notable papers:
Notable papers of 2012

The list includes genetic, brain structure and treatment studies.

And a discussion of research events from 2012 I. Their director’s column:

Director’s column: 2012 in review

Which is a good discussion of highlighted results.


By Matt Carey

Simons Foundation announces RFA for Explorer Awards

17 Apr

The Simons Foundation is a large source of funding for autism research. They have posted a RFA (request for application) for their Explorer Awards RFA

This award program is designed to enhance our existing support of autism research by providing timely resources to enable focused experiments highly relevant to our mission. A deeper understanding of the mechanisms underlying autism spectrum disorders or potential therapeutic approaches will require investigation at multiple levels, including but not limited to studies focused on gene discovery, molecular mechanisms, circuits, anatomy, and cognition and behavior. We will consider proposals at all of these levels.

The maximum budget is $60,000, including indirect costs for one (1) year, non-renewable.

The full RFA is on the Simons website: Explorer Awards RFA

Workshop report: Regression in autism

17 Apr

Simons Foundation has an article on their recent workshop on regression in autism. Here are the first two paragraphs:

A number of studies suggest that a subset of children with autism make significant social and language gains in the first year of life, and then experience a dramatic loss of skills. As infants, these children babble and make eye contact. However, those abilities suddenly disappear. This loss of skills is known as regression.

Some research suggests that these children may be a unique subgroup within the autism spectrum, distinct from those who show more gradual declines. The question of whether there is an abrupt change in only some children with autism has become an important topic for parents, clinicians and researchers.

Simons Foundation is the largest non government source of autism research funding. They are a private foundation. Their website and blog are great resources for those who follow autism research.

It is very tempting to pull a number of quotes from their article, but instead I’d encourage readers to go to the Simons website and read the article, regression in autism.

Simons Foundation: Notable papers of 2011

5 Jan

The Simons Foundation has an article discussing their choices of Notable papers of 2011. Below are their choices and links to the Simons Foundation blog (SFARI) articles which discuss them. Also given are links to pubmed for the original research articles.

Study finds high rate of autism in South Korea
Pubmed

Family sequencing study boosts two-hit model of autism
Pubmed

Networks of genes altered in autism brains, study says
Pubmed

Studies find high rate of rare new mutations in autism
Pubmed
Pubmed
Pubmed

Protein networks link different forms of autism, study says
Pubmed

Experts critique statistics, conclusion of autism twin study
Pubmed

Large study finds ‘baby sibs’ at high risk of autism
Pubmed

Autism tests struggle to balance accuracy and speed
Pubmed

Tuberous sclerosis, fragile X may be molecular opposites
Pubmed

Neurons made from stem cells reveal cellular flaws in autism
Pubmed

IAN Network Launches Critical Survey on Autism & Wandering

6 Apr

I received the following message from the Autism Science Foundation. The message discusses the survey to collect data on wandering by autistics. To participate, you need to register at the IAN Project website.

Today, the Interactive Autism Network (IAN) with support from leading autism advocacy groups including the Autism Science Foundation, launched the first major survey to study the experience of wandering and elopement, or escaping, among individuals with autism spectrum disorders (ASD). The tendency of individuals with ASD to wander or “bolt” puts them at risk of trauma, injury or even death, yet information on this critical safety issue is lacking.

Since 2007, the IAN Project, www.ianproject.org, has connected thousands of individuals on the autism spectrum and their families with researchers nationwide to accelerate the pace of autism research through an innovative online initiative housed at the Kennedy Krieger Institute in Baltimore, Maryland. With more than 36,000 participants today, the IAN Project has the largest pool of autism data in the world.

“Although similar behavior has been studied in Alzheimer’s disease and autism advocates identify elopement as a top priority, virtually no research has been conducted on this phenomenon in ASD,” said Dr. Paul Law, Director of the IAN Project at the Kennedy Krieger Institute. “The new survey will provide vital information to families, advocates and policy makers alike as they work to keep individuals with ASD safe.”

The survey will help researchers begin to answer important questions:

* How often do individuals with ASD attempt to elope? How often do they succeed? Under what circumstances?
* Which individuals with ASD are most at risk? At what age?
* What burden do efforts to thwart elopement behavior place on caregivers?
* What can be done to protect individuals with ASD and support their families?

To understand elopement and wandering behavior in ASD, researchers need information both from families of individuals who do and do not wander and elope. In order to determine who is at risk, all families in the U.S. autism community are encouraged to participate in the survey, whether or not their loved one engages in these behaviors. Survey participants must be enrolled in the IAN Project (to register, visit www.ianresearch.org) and be the parent or guardian of a child or dependent adult with ASD.

Due to the urgent need for this information by the autism community, preliminary data will be made available on April 20, 2011, provided the necessary sample size is reached for the research survey.

This survey is funded by the Autism Research Institute, Autism Science Foundation, Autism Speaks and Global Autism Collaboration. The IAN Project is also supported by the Simons Foundation and the National Institutes of Health.

Science based autism charities?

1 Jun

Science Based Medicine is a blog devoted to, well, discussing science based medicine. The subject of autism comes up fairly regularly, usually in the context of the vaccine/autism discussion. A recent SBM piece by Dr. David Gorski, Nine differences between “us and them,” nine straw men burning, caught my eye.

Dr. Gorski comments:

Alison Singer (@alisonsinger), President of the Autism Science Foundation, arguably the only truly science-based autism charity in existence at the moment,

I was about to write a comment when I decided that a blog post was more in order.

The Autism Science Foundation is a science-based autism charity. But, is it really arguable that there are no other truly science-based autism charities?

The answer (as you can likely guess) is “no”. Two names come to mind readily, but I don’t suggest this is an exhaustive list.

[Correction--it has been pointed out to me that both the foundations below do not accept public donations. Thus, they are not "charities". That would leave the Autism Science Foundation as the one major science based charity]

Who is the largest autism charity? A lot depends on how you define size, but let’s just consider money. Who has the most and who spends the most? If you are thinking Autism Speaks, you are incorrect. The answer is the Simons Foundation.

The Simons Foundation has two main focuses, Math&Science and Autism. They run one of the better blogs on autism science. One of the recent members added to the Interagency Autism Coordinating Committee is from Simons. Most of the autism charities you might know of are working on the basis of taking money in and turning around and spending that money. That is part of the reason why you know about them, they have to keep their name in the public’s eye to get donations. Simons works from an endowment, a foundation. A big one. As of 2008, Simons had assets worth over US$1 billion ($1.108B if you want details). From this endowment, they fund research. After the U.S. Government, they are likely the largest source of autism research funding in the world.

If you check the Simons Foundation website and blog, you will see a decidedly science oriented organization.

The Nancy Laurie Marks Foundation also supports a number of science projects, as well as some advocacy efforts. The Nancy Laurie Marks Foundation was working from an endowment of nearly $US90 million in 2008.

I will highlight two paragraphs from the Marks Foundation “about” page:

The principal goal of the scientific program is to achieve a deeper understanding of the biological basis of autism, focusing on genetics, synaptic chemistry, the neurobiology of communication, systems biology and the physiology of movement. The Foundation funds peer-reviewed research, the development of collaborative investigator projects, and research fellowship programs. Through sponsorship of scientific conferences, symposia and workshops, the Foundation seeks to encourage innovation and provide a springboard to generate new avenues of shared inquiry.

and

The NLM Family Foundation actively seeks partnerships with other grantmakers sharing its goals and fosters collaborations between investigators and organizations that have a direct interest in developmental disabilities. Of particular interest are projects which challenge stereotypes that stand in the way of people with autism realizing their potential, such as the misconception that people with autism are invariably mentally retarded and have minimal interest in social interaction. Challenging such stereotypes will lead to a greater public understanding of autism and widen the scope of scientific inquiry.

The Nancy Laurie Marks Foundation recently donated US$29 million to Massachusetts General Hospital to start a program focusing on the needs of autistic adults.

I am regularly taken to task on this blog for focusing too much attention on issues which are ever increasingly less relevant to the autism communities. I think Dr. Gorski’s comment is not a failure on his part, but, rather, on mine. While I have discussed both the Simons and Marks foundations, it is well worth the time to discuss them again. Any real change privately funded research may bring to the lives of autistics will come from groups such as these.

Special fevers, mitochondria and autism

30 Dec

Thats right, its back.

Ginny Hughes, writing for the Simons Foundation writes about new methods of detecting mitochondrial damages that may lead to autism. Of course, since last year that inextricably calls to mind Hannah Poling.

Just as a quick refresh, Hannah’s case was compensated by US Gvmt who accepted that vaccines caused a fever which triggered an underlying mitochondrial dysfunction which in turn led to ‘autism like symptoms’. This is oppose to ‘vaccines caused her autism’ which you’ll find a lot of people claiming.

The crux of the matter is fever. Mitochodrial dysfunction appears to be largely triggered by fever. Without the fever there’s no dysfunction. Without the dysfunction theres no autism.

Jay Gargus, professor of physiology and biophysics at the University of California, Irvine who’s studied mitochodria for 20 years makes a very telling point in this piece:

“It terrifies me that people will be making arguments [from this work] that further enhance the panic about vaccines,” Gargus adds. “Obviously, getting a vaccination will sometimes give you a fever, but the kid’s going to get a fever sooner or later anyway. It’s not like it’s a special fever.”

All kids get ill. They’re going to get fevers. In fact a lot of the things that vaccines try and prevent cause fevers. Flu for example. What vaccines don’t do is give a child a ‘special’ autism causing fever. Thats because there _is_ no special autism causing fever and no special autism causing vaccines either.

Autism research funding: who is paying and how much?

21 Jul

Ever wonder who is funding autism research and where the money is being spent? If you were watching/listening to the IACC meeting this week, you would have answers to a lot of these questions.

To answer the most basic question, the current annual expenditure on autism research in the U.S. is $225,000,000.

Most of us assume (and we are right) that in the US, the Government is the biggest source of research funding. But as it turns out, fully 35% of the research funding for autism in the U.S. is from private sources. That works out to over $78M in autism research funding is from private sources. Pretty impressive.

Anyone want to venture a guess as to who is the largest private source? Autism Speaks would be a good guess. It was mine. A.S. is a respectable second with $31M, but the number one private source of autism funding is the Simons Foundation, with $43M per year.

In case you want to see the entire breakdown of funding sources, here it is:

Autism Funding by Agency

Autism Funding by Agency

So, now we know where the money is coming from. The next question is “where is it going?” There are pages of detailed information on that in the research portfolio discussed at the IACC, but let’s take the summary view. In specific, NIH collated the research by category. They used the categories from the Strategic Plan:

I. When Should I Be Concerned?
II. How Can I Understand What Is Happening?
III. What Caused This To Happen And Can This Be Prevented?
IV. Which Treatments And Interventions Will Help?
V. Where Can I Turn For Services?
VI. What Does The Future Hold?

All of these categories are important and each of us will have a different view on the priorities. The issues I want to see get more funding involve figuring out how best to support autistics. In order to do so, I feel the research community has to fill a big gap in their knowledge when it comes to adult autistics.

Or, to put it in Strategic Plan categories, I think category V (where can I turn for services) and, mostly, VI (What does the future hold) need more attention and funding. As autism research funding grows, we should be expanding funding in these areas.

How is funding divided now? Well, here’s a pie chart:

Pie chart showing how autism research funding is distributed.

Pie chart showing how autism research funding is distributed.

Obviously the funding agencies don’t agree with me on priorities. Category V gets 1% of the funding, and category VI gets 5%.

Let’s put this another way: there are by some estimates roughly 1.5M autistics in the U.S. (I know that’s debated, but let’s go with it for a rough estimate). We are spending about $9M on understanding adults with autism. Roughly, $6 per autistic. Does that make sense?

Or, to put it another way, we have 300M people in the U.S.. Each of us is spending, what, $0.005 (one-half cent) a year on studying adults with autism? Surely we can do better than that.

It is worth stopping for a moment to acknowledge that the Strategic Plan is just getting started. The funding levels shown in the pie chart are going to change as the Plan is implemented. But, will research on adults be given high priority?

There are a lot of blog posts and news stories lately talking about how we as a society are not prepared for the “tidal wave” of autistics about to become adults. If that is your position, why not call for better research on adults? Why not call for the sorts of papers that will help you and your soon-to-be-adult children advocate for better services?

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