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Autism does not cause divorce

19 May

A new study at IMFAR reports:

Brian Freedman, PhD, lead author of the study and clinical director of the Center for Autism and Related Disorders at Kennedy Krieger Institute, said the findings seem to debunk a lot of the general understanding about high divorce rates among parents of children with autism. Dr. Freedman and his research team found that 64 percent of children with an autism spectrum disorder (ASD) belong to a family with two married biological or adoptive parents, compared with 65 percent of children who do not have an ASD.

This is the first scientific study (I believe) that has actually addressed this question. We can of course all recall the utterly unfounded scare stories of 80% put about by know-nothings such as Jenny McCarthy who said on an episode of Oprah:

Soon after Evan’s diagnosis, Jenny says the stress of raising a child with autism began to take a toll on her marriage. An autism advocacy organization reports that the divorce rate within the autism community is staggering. According to its research, 80 percent of all marriages end.

“I believe it, because I lived it,” she says. “I felt very alone in my marriage.”

and which autism organisation was that? You might not be amazed to discover its the equally know-nothing bunch at the National Autism Association.

NAA is presently conducting a national divorce survey of autism families. Several organizations and news outlets have used the often-quoted autism divorce rate of 80%–NAA hopes to confirm or update that percentage before referencing it in its program materials.

Get a clue NAA – maybe you should’ve done the research before letting rent-a-gob loose on the Oprah show.

Prevalence Rates of Autism Spectrum Disorders Among the Old Order Amish

17 May

One of the topics that comes up over and over online is “The Amish don’t vaccinate” and “the Amish don’t have autism”. Both statements are incorrect. The Amish have no religious prohibition against vaccination and they do have autism.

The question of autism amongst the Amish has been studied and is being presented at the IMFAR autism conference this week. The paper,
Prevalence Rates of Autism Spectrum Disorders Among the Old Order Amish, demonstrates a preliminary prevalence of 1 in 271 as the prevalence of autism amongst Amish children in two Amish communities: Holmes County, Ohio and Elkhart-Lagrange County, Indiana.

J. L. Robinson , Hussman Institute for Human Genomics, University of Miami Miller School of Medicine, Miami, FL
L. Nations , Hussman Institute for Human Genomics, University of Miami Miller School of Medicine, Miami, FL
N. Suslowitz , Center for Human Genetics Research, Vanderbilt University, Nashville, TN
M. L. Cuccaro , Human Genetics, University of Miami School of Medicine, Miami, FL
J. Haines , Center for Human Genetics Research, Vanderbilt University, Nashville, TN
M. Pericak-Vance , Hussman Institute for Human Genomics, University of Miami Miller School of Medicine, Miami, FL
Background:

The prevalence rate of Autism Spectrum Disorders (ASD) appears to be steadily increasing. The latest report from the Center for Disease Control estimates the rate of ASD is 1 in 91 children (Kogan, 2009), up from 1 in 150 in 2007. Understanding the seeming changes in ASD prevalence require careful exploration of genetic and environmental factors. A method that has proven useful in dissecting the etiology of complex diseases is the study of isolated populations. One population isolate that has been studied extensively is the Amish, with well over 250 genetic studies. Expanding studies of autism to the Amish may provide important information about etiology. A crucial first step in this process is a feasibility study to determine ASD prevalence rates in this population.

Objectives:

This study presents preliminary data on the estimated prevalence of ASD among the Amish in two Amish dominant counties as part of a larger epidemiological study. All children between ages 3 to 21 in those counties will be screened for the presence of an ASD.

Methods:

Screening occurred in, two of the largest Amish communities in the United States. Trained clinicians ascertained door to door using a published Amish Directory as a guide. Families were approached and asked to participate in a brief interview regarding their children. Two primary screening instruments were used: the Social Communication Questionnaire (SCQ) and the DSM-IV-TR Checklist (a tool created by the authors). A Vaccination History and a brief family history including questions specific to the ASD phenotype were also taken. Children screening positive on either the SCQ or DSM-IV-TR Checklist were seen for a more comprehensive clinical evaluation by two licensed psychologists. This evaluation included the Autism Diagnostic Observational Schedule (ADOS) and Autism Diagnostic Interview (ADI).

Results:

From September 2008 to October 2009, 1899 Amish children were screened in the two Amish communities. A total of 25 children screened positive for ASD on either the SCQ or the DSM-IV-TR checklist. A total of 14 screened positive for ASD on both screeners. Of those 25 children, 14 were evaluated and seven children were confirmed as having a diagnosis of ASD using the ADI and/or ADOS, and clinical judgment. Interestingly, four of the seven only met ASD criteria on the ADOS but not the ADI. Three of the four who were not diagnosed by the ADI only missed criteria on the Behavioral Domain, which may be attributable to the reporting style of Amish caregivers.

Conclusions:

Preliminary data have identified the presence of ASD in the Amish community at a rate of approximately 1 in 271 children using standard ASD screening and diagnostic tools although some modifications may be in order. Further studies are underway to address the cultural norms and customs that may be playing a role in the reporting style of caregivers, as observed by the ADI. Accurate determination of the ASD phenotype in the Amish is a first step in the design of genetic studies of ASD in this population.

Nature Fubar

13 May

Nature, the usually reputable Science magazine have launched a Scitable Autism section and with it screwed up their usual impeccable attention to detail.

Who for example thought it necessary to put:

Determining the cause of — and the cure for — autism is crucial for our society

I wonder. And who thought it necessary to link to no less than three anti-vaccine links on the home page of this….blog? Wiki? Two links to Autism Speaks whose controllers recently attended a DAN! conference and one link to ARI itself.

Its a ridiculous and desperately sad state of affairs when even Nature, that bastion of good science resorts to scaremongering about autism and promoting an anti-vaccine viewpoint.

Dr. Tom Insel on Demystifying Autism

12 May

Dr. Tom Insel wears many hats, as they say. He is the director of the National Institute of Mental Health (NIMH), one of the National Institutes of Health run by the US Government. As part of his function there, he chairs the Interagency Autism Coordinating Committee (IACC). The IACC prepares the “Strategic Plan” for the government’s activities in autism research.

Dr. Insel has obviously taken autism research very seriously. He doesn’t just chair the IACC, he obviously spends a lot of time reviewing autism research. I doubt many people at the Director level at NIH would spend the amount of time Dr. Insel obviously spends on autism.

He has recently given a few talks on autism, the current state of knowledge and the directions for research. One such talk was at NIH and was titled Demystifying Autism . Another talk was given at MIT and was hosted by the Simons Foundation. (sorry, I can’t find embed code for those talks)

Dr. Insel talks about how there is a large diversity in the autism population. The “spectrum” is broad, as likely most readers to this blog will already know. In both talks, Dr. Insel uses video from Dov Shestak (son of Portia Iverson and Jon Shestak, founders of Cure Autism Now, which is now part of Autism Speaks). This is used to give an example of regression in autistics.

Of course one large section is devoted to the increasing autism prevalence. Dr. Insel mentions the epidemiological work of Peter Bearman, which shows that much of the increase in the California Department of Developmental Services autism caseload can be accounted for by diagnostic changes and social factors. But, not all of the increase has been accounted for. Dr. Insel uses the term that the burden of proof is on those who would say that the increase is not “real”. I would put it differently–that given the lack of definitive information on the causes of the rise, we should continue to look for possible environmental causes. Many use the term “environmental cause” to mean “vaccines”. That’s not what I, or it appears, Dr. Insel mean though.

Dr. Insel discusses one yet-unpublished study: the California Twin Study.

Here is his power point slide (which you can click to enlarge if you wish):

Slide showing results of yet unpublished twin study

Dr. Insel's slide on Twin Study

or–

Narrow criteria:
monozygotic (“identical”)–80% concordance
dizygotic (“fraternal”)– 26% concordance
.
broad criteria
monozygotic–87% concordance
dizygotic– 39% concordance

This is consistent with a recent study from the Kennedy Kreiger Institute at Johns Hopkins. While this wasn’t discussed by Dr. Insel, I include the abstract for that study below:

OBJECTIVES: To examine patterns of autism spectrum disorder (ASD) inheritance and other features in twin pairs by zygosity, sex, and specific ASD diagnosis. DESIGN: Cross-sectional study. SETTING: Internet-based autism registry for US residents. PARTICIPANTS: Survey results from 277 twin pairs (210 dizygotic [DZ] and 67 monozygotic [MZ]) aged 18 years or younger with at least 1 affected twin. MAIN EXPOSURES: Zygosity and sex. OUTCOME MEASURES: Concordance within twin pairs of diagnosis, natural history, and results from standardized autism screening. RESULTS: Pairwise ASD concordance was 31% for DZ and 88% for MZ twins. Female and male MZ twins were 100% and 86% concordant, respectively, and DZ twin pairs with at least 1 female were less likely to be concordant (20%) than were male-male DZ twin pairs (40%). The hazard ratio for ASD diagnosis of the second twin after a first-twin diagnosis was 7.48 for MZ vs DZ twins (95% confidence interval, 3.8-14.7). Affected DZ individual twins had an earlier age at first parental concern and more frequent diagnoses of intellectual disability than did MZ twins; MZ twins had a higher prevalence of bipolar disorder and Asperger syndrome and higher concordance of the latter. Results of autism screening correlated with parent-reported ASD status in more than 90% of cases. CONCLUSIONS: Our data support greater ASD concordance in MZ vs DZ twins. Overall higher functioning, psychiatric comorbidity, and Asperger syndrome concordance among affected MZ vs DZ twins may also suggest differential heritability for different ASDs. For families in which one MZ twin is diagnosed with ASD, the second twin is unlikely to receive an ASD diagnosis after 12 months. In addition, Internet parent report of ASD status is valid.

Concordance is when one child has an ASD, does the other one? 100% concordance would mean that if one twin has an ASD, the other twin does as well. That would indicate that autism is purely genetic.

Most people will concentrate on the monozygotic concordance. Even with the broad criteria, there is 87% concordance. That would indicate that at least some fraction of the cause of autism is not genetic. This is a very complicated question, as Joseph at the Autism Natural Variation blog has discussed.

What is astounding to me is the dyzogotic concordance. Take the 39% for the broad criteria. My recollection is that the concordance for siblings is about 4% if one sibling is male, and about 10% if one sibling is female. I’m trying to find the study on this. But, is there a higher concordance for dizygotic twins than for siblings in general?

Dr. Insel spends a fair amount of time on the genetic studies involved in autism. He attributes about 15% of the current autistic population as being linked to known genetic conditions. This is a pretty common estimate in the community.

One interesting fact: the known genes associated with autism are neurodevelopmental and involved with synapses. He even titles the slide as “Autism as a synaptic disease” and proposes that synaptic function might be the unifying feature of autism.

Dr. Insel notes that there are many chemicals whose neurotoxicity have not been determined. He also notes that there are some known chemicals which increase the risk of autism–valproic acid, Thalidomide and misoprostal. For all of these there is a critical window of time–in the first or early second trimester of pregnancy–where the autism risk is increased. Thalidomide, for example, is considered to be causal in a short period of time–from 20 to 24 days gestation.

If you want to see the direction Dr. Insel may take autism research in the future, these talks are worth listening to. I think it safe to say that autism research will continue to look for causes, genetic and environmental. Environmental cause research will likely focus on prenatal exposures. Study will continue on the physical structure of the brain, the “circuitry” to help define what autism is and what the phenotypes may be. Study will continue on interventions, with a look towards earlier interventions (before age 1, possibly before symptoms are visible). Intervention research will look to be tailored to the individual, which will require some way to phenotype autism.

As I noted above, I think Dr. Insel is taking a close interest in autism. He doesn’t dictate the goals for autism research, but I think listening to what he has to say gives in interesting insight into the directions it may be going.

Green Our Vaccines: science, slogan or smoke screen?

5 May

In June, 2008, Jenny McCarthy of Generation Rescue led the “Green Our Vaccines” rally in Washington. The stated reason for the rally was to “Demand Congress take action to Green Our Vaccine Supply while reassessing our current vaccine schedule.”

They weren’t anti-vaccine, they were anti-toxin.

How sincere was this movement?

Consider this question and answer from Jenny McCarthy’s interview for Frontline:

Tell me about “Green Our Vaccines” and what you want to happen.

I don’t think there is a green vaccine. The purpose in our statement of Green Our Vaccines really is: Let’s take a look at our environment. Let’s take a look at some of these toxic ingredients and pull them out. Let’s take a look at a safer schedule. I mean, our motto was “Too many, too soon” with the Green Our Vaccines march. And like I said, it’s not like I’m looking for a Whole Foods version of a shot. We’re looking for just a smarter and safer one in that title of Green Our Vaccines.

Repeated for emphasis–“I don’t think there is a green vaccine”. Sort of vague there. Is she saying there can be no green vaccine? That’s how I read it at first. Considering that Jenny McCarthy considers the active parts of vaccines (bacteria and viruses) to be “toxic” ingredients, I’m not sure if she can believe in a green vaccine.

So, was it really about “too many too soon”, the vaccine schedule? No. It’s still mercury. Consider Generation Rescue’s mission statement from their tax form (dated 2009-11-16). (click to enlarge)

Mission Statement for Generation Rescue

My own rough transcription:

Generation Rescue, inc. has a four point mission. Gather information that exists about mercury toxicity and publicize the truth so parents can make the best decision to help their children heal. 2. Organize doctors to treat the millions of affected children through education and conference sponsorship. Sponsor research to further the understanding between mercury and neurodevelopmental and other health disorders and to help organize the cure for mercury poisoning. 4. Support legislation to ban the use of thimerosal in medicine on a worldwide basis.

The mission statement has nothing about “green vaccines” or “too many too soon” or any of the talking points. Just mercury.

Why bring this up? Is anyone surprised that “Green Our Vaccines” and “Too Many Too Soon” are just slogans?

Well, it is worth bringing up from time to time. Generation Rescue would like you to believe that there has been a big fail by the public health establishment. They would like you to believe that the government has been avoiding looking at “the schedule” and has only looked at “one vaccine and one ingredient”.

Well, one ingredient is exactly what Generation Rescue’s mission is all about.

As long as the tax form is available, take a look. Jenny McCarthy seems to be good for generating new revenue. GR brought in $1,185,255 in 2008. Pretty respectable. That’s up from $424,698 the year before.

Generation Rescue’s expenses went up to. They spent $229,213 fund raising alone. This was part of total expenses totaling $745,238.

Let’s break that down a bit. Of the total expenses, $220,654 went to “MARKETING &AWARENESS COSTS”. Let’s consider that to be part of GR’s mission, spreading the word.

What does that leave? Expenses of $524,584. Or, about 44% of the donations.

Another way to look at it: if you donate a dollar to Generation Rescue, 44 cents goes to overhead.

Of course, one could compare Generation Rescue to Autism Speaks, who takes in $66,000,000 in order to put out $27,000,000 in grants–or about 41 cents on the dollar goes to the mission. Autism Speaks has about $14,000,000 in fund raising expenses and about $18,000,000 in salaries.

Ah, but I am getting off topic.

Generation Rescue has a single mission. The same mission they’ve always had. They appear to expanding to “too many too soon” but, in reality, it is just about mercury.

Finding common ground at the IACC

1 May

The Interagency Autism Coordinating Committee (IACC) met Friday. New members were introduced, including Ari Ne’eman of the Autistic Self Advocacy Network.

The autism communities are far from unanimous in goals and methods. Given the makeup of the IACC, consisting as it does of governmental agencies plus public members of organizations that have been highly critical of each other, one might wonder if it anything could get accomplished.

But, in the end, most groups have more than a single goal. And, if you remember back to your set theory lessons, that leads to intersections–overlap–common ground.

I was reminded of this watching the IACC meeting. I could only watch bits and pieces during the day. One standout part of the morning came when Jim Moody of the National Autism Association gave a public comment talking about issues of safety, elopement, drownings–preventable deaths of autistics young and old.

Towards the end of the meeting I listened to a number of people refer back to this presentation. Amongst these commenters was Ari Ne’eman. Mr. Ne’eman obviously took the idea seriously and was calling for serious consideration of how this could be implemented into the Strategic Plan, calling for input from the services subcommittee.

I know the idea of safety are not new to Mr. Ne’eman. I contacted him recently when I was preparing a piece, Search and Rescue and autistics.

The members of the IACC span a wide diversity of ideas and viewpoints. Diversity, that’s a good thing.

But, working together for the common good: that’s common ground. Ideas that span diverse organizations and viewpoints. That is a very good thing.

Interagency Autism Coordinating Committee welcomes new members

30 Apr

The Interagency Autism Coordinating Committee (IACC) is a U.S. government committee which oversees autism research activities of the various U.S. agencies. The committee is made up of a representatives of those agencies plus members of the public.

The current public members are:

Lee Grossman
President and CEO
Autism Society

Yvette M. Janvier, M.D.
Medical Director
Children’s Specialized Hospital

Christine M. McKee, J.D.

Lyn Redwood, R.N., M.S.N.
Co-Founder and Vice President
Coalition for SafeMinds

Stephen M. Shore, Ed.D.
Executive Director
Autism Spectrum Consulting

Alison Tepper Singer, M.B.A.
President
Autism Science Foundation

Here is the announcement for the new members

Secretary Sebelius Announces New Members of the Interagency Autism Coordinating Committee

Health and Human Services Secretary Kathleen Sebelius announced today the appointment of five new members to the Interagency Autism Coordinating Committee (IACC), a federal advisory committee created in an effort to accelerate progress in autism spectrum disorder (ASD) research and services.

The committee is composed of a diverse group of federal officials from HHS agencies and the Department of Education, as well as public members that include people with ASD, parents of people with ASD, and leaders of national ASD advocacy and research organizations.

In January 2009, the IACC released its first strategic plan for autism research. The IACC released a second edition of its strategic plan in January 2010.

“Today I am pleased to announce new members of the IACC, who will bring additional points of view and expertise to the committee,” Secretary Sebelius said. “I look forward to hearing from the committee members on important matters that affect people with autism and their families as we continue our efforts to address this urgent public health challenge.”

ASDs are a group of developmental disabilities that cause major social, communication and behavioral challenges with symptoms that present before age 3. ASDs affect each person in different ways and can range from very mild to severe. People with ASDs share some similar symptoms, such as problems with social interaction. The Centers for Disease Control and Prevention estimates that an average of 1 in every 110 children in the United States has some form of ASD.

For more information on the IACC, visit http://www.iacc.hhs.gov/

New Members of the Interagency Autism Coordinating Committee

Geraldine Dawson, Ph.D.
As chief science officer for Autism Speaks, Dr. Dawson works with the scientific community and stakeholders to shape and expand the foundation’s scientific vision. She also is a licensed clinical psychologist with a research focus on early detection and intervention, early patterns of brain dysfunction and the identification of biological markers for autism genetic studies. Dr. Dawson also serves as research professor of psychiatry at the University of North Carolina at Chapel Hill, adjunct professor of psychiatry at Columbia University and professor emeritus of psychology at University of Washington.

Gerald D. Fischbach, M.D.
Dr. Fischbach is the scientific director for the Simons Foundation where he oversees the Autism Research Initiative. He has spent his career as a neuroscientist studying the formation and maintenance of synapses, the junctions between nerve cells which allow signals to be transmitted. Before joining the Simons Foundation, Dr. Fischbach served as the Director of the National Institute of Neurological Disorders and Stroke from 1998 to 2001 and as the Executive Vice President of Columbia University Medical Center and Dean of the faculties of medicine from 2001 to 2006.

Ari Ne’eman
Mr. Ari Ne’eman is the founding president of the Autistic Self Advocacy Network, where he works to increase the representation of autistic people in public policy discussions. He is an adult on the autism spectrum and a leading advocate in the neurodiversity movement. Mr. Ne’eman has served on the New Jersey Adults with Autism Task Force and the New Jersey Special Education Review Commission, where he authored a minority report advocating legislative action against the use of aversives, restraint and seclusion. He is a board member of TASH, an advocacy group for people with disabilities, and is involved with the Maryland Coalition for Inclusive Education.

Denise D. Resnik
Denise Resnik is the co-founder and board development chair of the Southwest Autism Research & Resource Center (SARRC). She is the mother of an 18-year-old son with autism. Ms. Resnik serves on the Autism Speaks Family Services Committee and Advancing Futures for Adults with Autism (AFAA) Steering Committee. She participated in the 2006 NIMH Autism Matrix Review and the IACC Scientific Workshops to develop the IACC Strategic Plan and subsequent updates.

Marjorie Solomon, Ph.D.
Assistant professor of Clinical Psychiatry at the University of California, Davis

Dr. Marjorie Solomon is an Assistant Professor of Clinical Psychiatry in the Department of Psychiatry and Behavioral Sciences at the University of California, Davis. She serves on the Faculty of the Medical Investigation of Neurological Disorders (MIND) Institute and the Autism Research Training Program where she conducts research on a social skills training intervention for high-functioning children with ASD, incorporating parents and siblings in the research. In addition to her clinical research work, Dr. Solomon studies cognition and learning in high-functioning individuals with ASD.

Just how big is the National Autism Association anyway?

29 Apr

The Interagency Autism Coordinating Committee (IACC) is meeting tomorrow. On the agenda is “Welcome and Introductions of IACC Members”.

It is no secret that many groups have wanted a seat at the IACC table. Autism Speaks was previously represented by Alison Singer, but she left Autism Speaks to form her own organization, the Autism Science Foundation. The vaccine-causation groups have been very interested in increasing their presence on the IACC. Currently, they are represented by Lyn Redwood of SafeMinds. But, Generation Rescue and the National Autism Association and, I assume, TACA would like to have membership on the Committee.

In a recent blog piece discussing the IACC, Katie Wright, board member for the National Autism Association and Generation Rescue, pointed out the broad membership base of the NAA and TACA. Further, she stresses the importance of a “significant public constituency”

The National Autism Association, representing 12,000 dues paying parents and TACA representing 17,000 parents implored Dr. Collins to assign these organizations seats on IACC. Of the 19 members on the committee, only 3, Lyn Redwood, Lee Grossman and Stephen Shore represent a significant public constituency.

To me, the message seemed clear. The NAA or TACA should be on the IACC because they are so big. They represent such a large base of support.

I’ve been reading about how these groups represent “thousands” or “tens of thousands” of families for some time. The statements are always unsupported, so I tend to give them little weight. But when I read the above statemen, I spotted the phrase “dues paying”. To me, that reads as “a fact I can check”.

So I pulled the 990 forms for the NAA. 990 forms are the tax forms that charitable organizations file in the US, and they are made public, albeit after a couple of years.

The 2008 form 990 shows under “membership dues” that the NAA took in $17,640.

Membership dues to the NAA is $35/year for an individual, $60 for a family. This was the same in 2008.

Taking the $35 value, that gives a membership for the NAA of 504 (an upper bound estimate). Very respectable. Not 12,000, though. Perhaps they’ve had a major membership boom since 2008. Perhaps I misunderstood something. But, this fact check would suggest that the 12,000 claim for the NAA’s membership is, perhaps, somewhat high.

Maybe 2008 was a bad year for the NAA? Checking the other Form 990’s for the NAA gives the following amounts for dues collected:

2006: $14,950
2007: $22,592
2008: $17,640

Hmmm. Looks like they may have peaked in 2007.

Perhaps there are a number of dues paying members in the NAA chapter. Guidestar shows a number of these NAA chapters. The few I checked (like the Northeast Ohio chapter) report no dues.

I’m open to being corrected, with proof. But, for now, it looks to this observer that the National Autism Association membership is much less than the 12,000 claimed.

Whether the size is important, that is a discussion for another post.

Watch Frontline’s Vaccine War online

28 Apr

I’ve only been able to watch the first few minutes so far, but I wanted to make this available.

(I’ve emailed asking if there is a captioned version)

If you want to read–written interviews:

Jenny McCarthy
She’s an actress, celebrity and activist. Her son was diagnosed with autism following a series of vaccinations, and she’s helped organize a movement of parents concerned about a vaccine-autism link.

Cynthia Cristofani, M.D.
A pediatric intensivist who takes care of children who need critical care, Cristofani decided to start documenting the rare cases of vaccine-preventable illness that turned up in her Portland, Oregon ICU.

Anthony S. Fauci, M.D.
He is an immunologist and the director of the National Institute of Allergy and Infectious Diseases [NIAID].

Alvaro and Myrian Fontan
They watched in anguish as their 40 day-old baby Vanessa — not yet old enough for the pertussis vaccination — fought for her life.

J.B. Handley
A businessman whose son was diagnosed with autism, Handley co-founded with his wife the autism advocacy site Generation Rescue.

Paul Offit, M.D.
Co-developer of a vaccine for rotavirus, the leading cause of severe diarrhea in children, Offit is chief of the infectious diseases division at The Children’s Hospital of Philadelphia.

Kathleen Sebelius and Francis Collins to speak at next IACC meeting

21 Apr

The Interagency Autism Coordinating Committee (IACC) will hold its next meeting on Friday, April 30. I checked the agenda for this meeting and found that Kathleen Sebelius, Secretary of Health and Human Services, and Francis Collins, Director of the NIH will be speaking.

The meeting will be videocast and available via telephone.

Here is the agenda for the next IACC meeting:

IACC Full Committee Meeting Agenda

Friday, April 30, 2010
9:00 a.m. – 5:00 p.m. Eastern

The Ronald Reagan Building and International Trade Center
Rotunda Room
1300 Pennsylvania Avenue, N.W.
Washington, DC 20004

Time Event
9:00 a.m. Registration

10:00 Call to Order and Opening Remarks

Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
10:05 Kathleen Sebelius
Secretary, Department of Health and Human Services

10:20 Welcome and Introductions of IACC Members

10:55 Francis Collins, M.D., Ph.D.
Director, National Institutes of Health

11:10 Break

11:25 Research Update: Autism Treatment Network
Geraldine Dawson, M.D.
Chief Science Officer, Autism Speaks

11:50 Research Update: Autism in the DSM-V
Susan E. Swedo, M.D.
Senior Investigator, Behavioral Pediatrics Section
Pediatrics and Developmental Neurospsychiatry Branch, NIMH

12:15 Lunch

1:30 Public Comments

2:00 Research Update: Stem Cell Talk

James Battey, M.D.
Director, National Institute on Deafness and Other Communication Disorders

2:25 Research Update: NIH Nonverbal ASD Workshop
Helen Tager-Flusberg, Ph.D.
Director, Laboratory of Developmental Cognitive Neuroscience, Boston University

Ann Wagner, Ph.D.
Chief, Neurobehavioral Mechanisms and Mental Disorders Branch, NIMH

2:50 Research Update: Building the Infrastructure for Comparative Effectiveness Research on Disability Issues
Rosaly Correa-de-Araujo, M.D., MSc, Ph.D.
Deputy Director, Office on Disability, Office of the Secretary

3:15 Approval of January 19, 2010 IACC Committee Minutes

3:20 Update: Planning Subcommittee
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC

3:50 Break

4:00 OARC Update

* 2009 Summary of Advances
* IMFAR Update

4:20 Public Comments Discussion Period
4:50 Closing Comments
5:00 Adjournment

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