AGE OF AUTISM

IACC Request For Information Due 8/21

By Kim Stagliano

Below is info on a Request for Information from the IACC. Meanwhile, enjoy the tune. Comment if you get the joke. I couldn't find one more specific to the phrase. Thank your lucky stars.  KS

--- On Wed, 7/29/09, NIMH IACCPublicInquiries (NIH/NIMH) <iaccpublicinquiries@mail.nih.gov> wrote:

From: NIMH IACCPublicInquiries (NIH/NIMH) <iaccpublicinquiries@mail.nih.gov>

Subject: Interagency Autism Coordinating Committee (IACC) Requests Public Comment

To: "NIMH IACCPublicInquiries (NIH/NIMH)" <iaccpublicinquiries@mail.nih.gov>

Date: Wednesday, July 29, 2009, 2:16 PM

Request for Information (RFI): ) Updating the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder (ASD) Research  

On behalf of the Interagency Autism Coordinating Committee (IACC), the Nation Institute of Mental Health is seeking comments to inform the annual update of the IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research, as required by the Combating Autism Act of 2006 (P.L. 109-416).

The purpose of this RFI is to solicit input from ASD stakeholders to inform the next update of the Strategic Plan.   In the RFI form, there will be an opportunity to provide input on each section of the IACC Strategic Plan.  Please include suggestions regarding missing or underrepresented knowledge areas, new opportunities needed for advancing research and knowledge about ASD, and suggestions for prioritizing research objectives.

Overview of SafeMinds Swine Flu Concerns

From our sponsor SafeMinds..

In light of the many unknowns concerning the possible Swine Flu Pandemic, SafeMinds is providing the following updates for informational purposes and to raise awareness regarding possible vaccine safety issues, policy decisions and facts regarding the production and possible use of the novel H1N1 vaccine currently being developed.

Our primary goal in raising these concerns it is to promote the production of the safest vaccine possible as our nation develops its strategy with regard to a possible pandemic.  Given past safety failures and vaccine injuries resulting from the 1976 Swine Flu Immunization Program, we believe that lessons from those failures, as documented by Institute of Medicine President Harvey Fineberg, MD, PhD, as well as the draft recommendations made by the National Vaccine Advisory Committee, H1N1 Vaccine Safety Subgroup, must be integrated into the current effort to improve protection for all individuals.  Life is precious and safety a priority in assuring the health of every man, woman and child.  Please visit often for updates and subscribe to our newsletter for current information.

Swine Flu Update - July 23rd

During the FDA's Vaccine and Related Biologic Products Advisory Committee (VRBPAC) meeting of July 23rd convened to address the possible swine flu pandemic, it was revealed that some of the novel (pandemic) H1N1 inactivated vaccine would contain thimerosal (a vaccine preservative containing mercury) – ten years after the vaccine industry was asked by public health agencies and organizations to remove it (see statement at end of page). It was also reported that most manufacturers were having difficulty growing the novel H1N1 virus, suggesting that an adjuvant may be needed to “spare antigen” and to increase vaccine production.  Additionally, the CDC’s ferret studies suggest that the novel H1N1 virus is not as contagious as has been reported. 

Dr. Geri Dawson of Autism Speaks on the Vaccine Question

Click HERE to read the Autism Speaks news alert on Dr. Geri Dawson's vaccine-related interview.  Feel free to read and comment here.

Let me start out by asking the question that seems to be on many people's minds – Do vaccines cause autism?

Parents often look to environmental factors to explain their child's autism, and they often have questions about the possible role of vaccines. Most scientists agree that autism is caused by a combination of genetic susceptibilities which interact with environmental risk factors. We have discovered some of the risk genes for autism, but we still know little about the potential environmental triggers. We also have come to understand that there are many causes of autism, and that any one cause will likely only explain a minority of cases. Piece by piece, we must discover each of these causes so that effective treatments and prevention will be possible.

 

Defeat Autism Now! October 8-12 Featuring "Angel Rate" and Other Savings

Managing Editor's Note: Our friends (and sponsor) at ARI have opened registration for the Fall DAN! conference at the luxurious, but affordable Faimont Hotel in Dallas, Texas. In keeping with the spirit of Dr. Rimland, who knew the Moms and Dads needed support, ARI is offering Angel Rates for families who otherwise would not be able to attend and other cost saving programs like Buddy Passes and volunteer opportunities. Don't assume you can't attend due to price until you check out all your options!  I can't tell you what a emotional boost it is to meet other parents at conferences. It's a LOT cheaper than mental health therapy. ;) KS

Learn more and register at Defeat Autism Now!

 From Executive Director Jane Johnson: If you have a child affected by autism you already know that “recovery” doesn’t mean “cure.” Our conferences provide the latest information for parents and professionals, information that leads to medical treatment and metabolic support sufficient to reduce physical pain and roadblocks in children with autism, to the extent that many are newly able to communicate and learn.

Will H1N1 Vax Contain Thimerosal (Mercury)? ABC News Answers.

This is a still shot from an ABC News story: Study: Pregnant Women Hospitalized More Often For Swine Flu of Panavax, an H1N1 vaccine currently in testing (there are several.) The label indicates that this is a multi-dose vial containing Thimerosal used as a preservative.  Click the photo to enlarge it. I have Googled Panavax and can not find any info, other than domain name registration to Sanofi Aventis. We present this to you as an "FYI" as info about H1N1 and vaccination options come in, so that you can make informed healthcare choices for yourself and your family.

Bloomberg.com On H1N1 Vaccine Adjuvant Safety Concerns

Managing Editor's Note: As the info on H1N1, both the virus and the vaccines, becomes available, we'll post about it. We need as much info as we can get so we can make informed healthcare choices for our families. Bloomberg.com HERE raises questions about the safety of proposed adjuvants. Vicki Debold is quoted.

...The U.S. Health and Human Services Department declared a public health emergency over swine flu in April, and the Food and Drug Administration has the power to allow the use of unapproved medical products during such a crisis. The U.S. has been slow to approve the use of adjuvants because of safety concerns, and for fear of giving Americans an excuse to avoid getting the shots, said John Treanor, a University of Rochester researcher.

“The question is, do you really feel comfortable throwing this new thing into the mix and do you really need to?” said Treanor, a professor of medicine, microbiology and immunology at the school in Rochester, New York. “I myself, if I had to do it, would really wrestle with that decision.”

The CDC agreed to pay London-based Glaxo and Novartis, based in Basel, Switzerland, more than $415 million for adjuvants that could be added to the swine flu vaccines, according to a July 13 statement.

 

A Clear Biomarker for Autism? – The Question of Alterations in Lipid Metabolism.

By Kent Heckenlively, Esq.

(Author’s note – I’m indebted to Professor Richard Deth of Northeastern University for sending me this article.)

The title may be long and confusing, but the findings are what many have been hoping to discover for years.  (Novel Plasma Phospholipid Biomarkers of Autism: Mitochondrial Dysfunction as a Putative Causative Mechanism, Prostglandins Leukotrines Essent. Fatty Acids (2009) (HERE).

Given the profound differences in behavior and cognition in children with autism it's only reasonable to believe there must be some trace in the body of what makes these children so different. 

Researchers in Canada working for Phenomenome Discoveries, Inc. and the Jonty Foundation out of Saint-Paul, Minnesota believe they may have found the answer. 

Age of Autism on The Interagency Autism Coordinating Committee

Since we've run several posts about the IACC recently, We thought we'd provide you with an "at a glance" of many of our posts on the topic over the last year. (Remember, we have a Google search engine on the right sidebar below our ads.)

GRINKER'S STINKER: HIS WIFE RUNS THE IACC
Jan 15, 2008
By JB Handley
Who is Joyce Chung, MD?

According to the National Institutes of Mental Health, she’s the new “Autism Coordinator” and the Executive Secretary of the IACC. Let’s take a quick step back: when you read the acronym “IACC”, if you are anything like me, you wonder, “what the hell is that?”

NIMH Flip-Flops on Pivotal IACC Workgroup Meeting
Aug 25, 2008
By Kelli Ann Davis

Earlier this year, a “closed door” notice in the Federal Register announced an upcoming meeting of “four science workshops” tasked by the Interagency Autism Coordinating Committee (IACC) “to generate research priorities for the Strategic Plan” (SP). (Published by the Office of the Federal Register, National Archives and Records Administration (NARA), the Federal Register is the official daily publication for rules, proposed rules, and notices of Federal agencies and organizations, as well as executive orders and other presidential documents. It is updated daily by 6 a.m. and is published Monday through Friday, except Federal holidays.)

Autism Community Consensus Letter
Dec 11, 2008
By Jim Moody, Esq.The federal Interagency Autism Coordinating Committee (IACC) will meet this Friday, 9-4 at the Neurosciences Center (home of NIMH) in Rockville, Maryland.  This is a continuation of the November 21 meeting because there was not enough time to go through the substantial edits and additions (most of which were submitted by IACC member Lyn Redwood, Safeminds, and broadly supported by the community) required to finalize the Strategic Plan for autism research required by the Combating Autism Act. 

The (Not) Combating Autism Act in Action

By Katie Wright

This is an open letter to all the parents, families, teachers, therapists and others who worked so hard getting the CAA bill passed. Thousands of you called, e-mailed and wrote to your representatives. Dozens of families traveled to DC to meet with their Congresspersons and Senators and personally explain why autism research and services desperately need more funding. Some of you picketed the offices of non-supporters, my parents traveled to DC a dozen times and used every connection they had to make our families heard. It required Herculean efforts to pass a “single disease” bill but our community was relentless and determined.

Today The Interagency Autism Coordinating Committee is responsible for disbursing the millions of dollars in CAA funds. Almost no one who worked for the passage of the CAA was appointed to the committee. IACC is packed with bureaucrats who seem to have a very limited understanding of autism as a disease and autism science. Only Lyn Redwood, who has an encyclopedic knowledge of autism research, of NAA and SafeMinds is representing my child and the hundreds of thousands like him. Only Lyn comprehends the tremendous medical challenges facing our children and urges IACC to fund research that reflects a sense of urgency and purpose.

Most of the bureaucratic committee members could not make a decision about how to get out of paper bag. The talking and talking in circles, the requesting for the creation “blue ribbon panels”, more subcommittees and more outside opinion, goes on forever. Why didn’t Tom Insel just appoint autism experts to this autism committee in the first place? Why are committee members constantly struggling to understand the basics of autism science and looking to others to inform them how to make decisions? They wait and wait and wait to make decisions. Insel wants to wait for more subcommittees, wait for more expert opinion, wait for a new administration, wait until the next meeting- wait to grow old? The only thing IACC is in a hurry to do is adjourn! Then when IACC finally does make an important decision, such as to fund 2% of CAA monies on vaccine safety research, Insel hastily undoes that vote after the meeting.

The public members include Lyn Redwood, who represents 100,000s of families, as well as Lee Grossman of ASA and Stephen Shore, who represent organizations serving people with autism. An ASD Mom, Christine, was appointed because she is Insel’s neighbor. Christine seems like a perfectly nice person but represents no national autism organization and has no scientific background. And finally, Alison Singer. Singer, as you may remember, absconded with AS’s IACC seat and now runs a mysterious autism org in her basement. This bizarre org is led by Paul Offit and a handful of autism ancient history researchers. Don’t our families deserve better than this? Don’t our kids deserve REAL representation from established autism organizations?

A Mother Delivers When the IACC Fails

Last week, Katie Wright wrote about the IACC meeting that ended early, cutting off a young man with autism named Alex and his mother Elizabeth from presenting their comments. (Katie's post is below the jump, as a reminder.) The committee required public comments be presented prior to the meeting. The photo is of Alex holding the mic, as his mom had prepped him, helped him wait for several hours and she made sure he got his chance, even if it was only to appear in front of an empty room; the participants having decided to leave early, before Alex had his chance. Here is Elizabeth's letter and in .pdf. Thank you, Elizabeth. And most of all, thank you Alex.

July 13, 2009

Interagency Autism Coordinating Committee (IACC)
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8200
Rockville, MD 20852

Dear Committee Members,

The following are the scheduled remarks for Elizabeth Emken, Vice President of Government Relations, Autism Speaks, for the July 15, 2009 IACC meeting:

Hello. I am Elizabeth Emken, I’m Vice President of Government Relations at Autism Speaks. This is my son, Alex Swartz. He has autism spectrum disorder.

We are here today to show the committee another example of a person living with autism. We all know that autism is a spectrum disorder, but in meetings like these, that are very orderly with scheduled speakers and tented name cards, the environment is best suited to those on the spectrum that can express themselves. Alex Swartz, my son, is on a different part of the spectrum—and he represents a significant number of individuals living with autism. Most individuals with autism cannot walk up to this microphone and tell you what’s on their minds. Most can’t talk about how they feel, and discuss their
hopes and dreams with you. Many couldn’t be here, in this room, for more than a few moments.