January 30, 2009

I Love Soeren Palumbo



As I have said before, the siblings of our special kids are turning out to be exceptional people. The love and maturity that they show after living with and loving their brothers and sisters is one of the few things that give me hope in this world.

Thank you Soeren.

January 26, 2009

Time to Make Some Noise Over the IACC Shenanigans

Last week I told you about the sabotage of the government research into vaccination as a cause of autism... today it is time for you to protest.

The federal members of the IACC cannot be allowed to get away with these tactics.

From the Autism Action Network (formerly A-CHAMP)

Take Action!
Send a Letter to Your Reps, Key Officials and The Interagency Autism Coordinating Committee

Autism Action Alert:
Protest Federal Autism Committee’s Deceitful Reversal on Vaccine-Autism Research


Click HERE or "Take Action" On This Email To Send A Message Using Our System
If You Are Reading This Message On Our Web Site Scroll Down to Send a Message

The inexcusable actions of the Federal members of the Interagency Autism Coordinating Committee (IACC) in retracting vaccine-autism studies must be stopped. Sound science must move forward, not thwarted by Federal agencies with vested interests in on-going vaccine-autism injury litigation.

The autism advocacy organizations listed below implore parents of children with autism - and all those who care about the burgeoning rate of autism and its toll on the health of our children - to take immediate action.

We are asking you to write a letter of disapproval to key government decision-makers on autism. Click here for a sample letter and instructions on sending. Your letter will be sent to President Obama, your Senators and Representatives, HHS Secretary Tom Daschle, the Senate HELP Committee, Senators Christopher Dodd, Joe Lieberman, and Edward Kennedy, and Congressmen Chris Smith and Joe Barton.

Your letters are needed NOW. The next IACC meeting is Wednesday, February 4, 2009 - less than two weeks away!

Here is what happened. Click here (http://www.safeminds.org/pressroom/iacc-blocks-vaccine-autism-research.html) here (http://www.ageofautism.com/2009/01/iacc-rescinds-vaccine-research-initiatives.html) for more details.

In a highly unusual departure from procedure, government representatives to the IACC voted on January 14th against conducting studies on vaccine-autism research despite approval of the same studies at their prior meeting on December 12, 2008. The research was supported by numerous autism organizations and requested by IACC’s scientific work groups and Congress. The maneuver to re-vote was initiated by the IACC’s representative from the CDC and pushed through by the IACC Chair, Dr. Tom Insel, Director of the National Institute of Mental Health of NIH. Review of the studies was not listed on the committee’s official agenda, in violation of normal committee practice.

Unlike most Federal advisory committees, the IACC is dominated by government representatives occupying 12 of the 18 seats. Dr. Insel admitted at the meeting that HHS agencies (which includes NIH and CDC) have a conflict of interest in conducting vaccine-autism research due to “Vaccine Court” litigation in which HHS is the defendant. Of the 6 non-government (public) members, 5 voted to retain the vaccine research at the January meeting. The lone dissenting public member resigned from her organization, Autism Speaks, the night before the meeting. Autism Speaks has issued a statement denouncing her vote.

The Federal members of the IACC must know that the autism community objects to their manipulation of committee procedures to block unbiased research on the possible link between vaccines and autism.

They must hear that parents demand reinstatement by the IACC of the vaccine studies that were already part of the IACC’s Autism Research Strategic Plan, and to restore the funding already allocated to this research.

They must acknowledge the inherent conflict of interest of the NIH/CDC in conducting research on vaccine safety. Research initiatives MUST be coordinated by an independent committee that includes equal numbers of representatives from the autism-vaccine injured community and conducted by independent and non-biased entities.

We also urge parents to attend the February 4th IACC meeting in Washington DC if they are able to. Click here for the IACC website http://iacc.hhs.gov/events/ to register. We encourage you to sign up to make a public comment at the meeting.

Autism Action Network (AAN)
Autism One
Autism Research Institute
Generation Rescue
National Autism Association (NAA)
SafeMinds
Schafer Report
Talk About Curing Autism (TACA)
U.S. Autism & Asperger Association
Unlocking Autism

January 19, 2009

Shenanigans at the IACC

The Combating Autism Act of 2006 set aside almost a billion dollars for autism research, some of which was to go to environmental causes, some of which were to be vaccine research.

CAA created the Interagency Autism Coordinating Committee, to be made up of both federal officials and members of the public to put together a strategic plan deciding who would get the money to research what.

We got a good idea that the fix was in when Joyce Chung, wife of Roy Grinker, autism epidemic denier, was appointed the committee coordinator, and Thomas Insel, committee head, began making decisions to cancel chelation research (claiming that chelation procedures that are currently the standard of care for metal toxicity and have been so for the last half a century, were suddenly too dangerous to be tested on children with autism.)

Our suspicions were confirmed last week when, after giving the thumbs up to vaccine research in the previous meeting, a surprise revote was held, and the IACC decided to reverse itself and decided that vaccine research into the causes of autism was not necessary.

And it is not just the revote itself that stinks to high heaven, but stories of individual dramas surround the revote are coming to light, most notably Alison Singer's decision to resign from her VP position at Autism Speaks the night before the surprise revote because she knew that she was going to have to vote in opposition to the AS's stance that vaccine research is needed. But wait... if the revote was a surprise... how did Alison know the night before that the vote was coming and that it would be on the topic that it was on and that she would be voting the way she would and that AS would not like it?

What did Alison know and when did she know it?

And is Alison being given any incentives, financial or otherwise, to vote thusly? I mean quitting a six figure income job as VP in the biggest autism org in the world over one vote is quite a step, especially in this economy. She has been dining with Paul Offit and Every Child by Two was the first to run her press release on leaving AS. Merck funds Offit and Wyeth funds ECBT. Is Pharma money making its way into Alison's bank account in exchange for her vote to kill research into whether or not vaccines cause autism?

And wouldn't that be a criminal offense?

Today we learned that Generation Rescue and some friends have been tracking a large number of shenanigans that have been going on at the IACC, and that legal inquires may be on the horizon. Turns out that the committee is not being run by the rules. Shocker right?

The Federal Advisory Committee Act sets the rules on how federal advisory committees, (which IACC is) are to be run. Makeup, prior notices, input, disclosures and the like. But apparently Insel's IACC is above these rules and can just do what it likes.

Stay tuned... this is going to get interesting.

UPDATE: Katie's pissed.

January 10, 2009

Julie Gerberding Has Resigned

CNN is reporting that the current head of the CDC has resigned effective January 20th. Mike Leavitt, current head of HHS asked for her resignation along with several other senior officials at CDC. Gerberding will be replaced by William H. Gimson, COO, will take over as interim director until a new director is appointed by the Obama administration.

Does this seem odd to anyone? Why would the current head of HHS get rid of the head of CDC and place an interim director rather than just leaving her there for Tom Daschle, new head of HHS, to do as he likes with the staffing? Is there some reason that Leavitt does not want Gerberding and her associates to be under the purview of and answering to, Tom Daschle and Barack Obama?
Leavitt explained his move this way: "The next phase of Transition involves the departure of our team on January 20, and the arrival of President-elect Obama's team later that day," his e-mail said. "In order to create a clear path for leadership transition, I am attaching a list of senior leaders who will become the acting heads of their respective agencies and offices (or in some cases, remain as heads of their respective agencies and offices) until the new administration appoints individuals to various leadership positions."
Is this normal? Are other agencies in the US government resigning and putting interim people in place on Jan 20th?

Don't get me wrong... I am thrilled to see her go. Trying not to be giddy about it frankly. But this strikes me as the same kind of thing as moving the Vaccine Safety Datalink overseas so it can't be accessed. Gerberding will have lots of damning information that she would have to give up to the new administration if she still worked for the US Government. Best move the source of that information out of the reach of those who are in position to ask the questions that Leavitt/Bush don't want asked.

(Clinton's CDC director stayed on almost two years into the Bush administration)

Anyone wanna start bets on where our friend Julie will land? Eli Lilly? Merck perhaps?

Well Good bye and good riddance Julie. I hope that the knowledge that a generation of children were severely developmentally disabled by your policies keeps you awake at night, just like the kids you made sick and their parents are awake at night, until you decide to do the right thing and tell the truth.

And for those of you interested in just why I hold Dr. Gerberding in such disdain, here is an overview of the premium quality Bullshit that she shoveled in regard to the autism epidemic that is crippling our country (and our family).

And here, again, is Julie in her finest hour:





UPDATE:

The AJC is reporting that the Obama administration asked for her removal. Sorta.

The headline reads: "CDC director Gerberding resigns at Obama’s request"

But the text of the article just says "the Administration" requested the resignation, with out saying if they were referring to the Obama administration or the Bush administration. And the next "administration" that they referr to in the following sentence is Bush. So it is not clear if the headline is correct and Obama asked for her removal.

“As part of the transition process, the Administration requested resignation letters from a number of senior-level officials, including Dr. Julie Gerberding. This week, the Administration accepted Dr. Gerberding’s resignation, effective January 20. As Dr. Gerberding noted in a November e-mail to CDC leadership, she has always expected that she would be leaving after the administration changes,” the written statement said..

The article goes on to describe some of the mess that was Gerberdings CDC.

UPDATE: So apparently this replacement senario is happening with FDA as well, along with most of the health agencies. Is it ONLY the health agencies?

Most health agency heads replaced before Obama

WASHINGTON (Reuters) - Most of the heads of the U.S. agencies under the Health and Human Services Department will be replaced by their deputies by January 20, when Barack Obama is sworn in as president, employees learned on Friday.

An e-mail issued on Friday evening listed all of the agency heads who will go, ranging from the director of the U.S. Centers of Disease Control and Prevention to the head of the Food and Drug Administration.

Incoming presidents traditionally name the heads of agencies, especially with a change of party. Obama, a Democrat, is replacing Republican George W. Bush.

Obama has named Tom Daschle, a former senator, to be head of the Health and Human Services Department. Daschle has said he will act quickly to name permanent new heads of agencies such as the FDA.

Here is a list of some of the affected agencies:

FDA - Frank Torti, now principal deputy commissioner and chief scientist, will replace Dr. Andrew von Eschenbach.

CDC - William Gimson, now chief operating officer, will replace Dr. Julie Gerberding, who resigned this week.

Rear Adm. Steven Galson is already the acting U.S. surgeon-general.

Center for Medicare and Medicaid Services - Charlene Frizzera, now chief operating officer, will replace acting director Kerry Weems.

Agency for Healthcare Research and Quality - Dr. Carolyn Clancy will stay on as director.

Administration for Children and Families - Curtis Coy, now deputy assistant secretary for administration, will replace Daniel Schneider.

National Institutes of Health - Raynard Kington is already acting director after Dr. Elias Zerhouni resigned last year.

Substance Abuse and Mental Health Services Administration - Eric Broderick will stay on as acting administrator.

(Reporting by Maggie Fox; Editing by John O'Callaghan)

UPDATE: Salon.com's rundown of the damage she did:

But her tenure also proved controversial:

-- She instituted a large, morale-damaging reorganization of the agency that triggered an exodus of admired agency scientists. Gerberding said the changes made the CDC stronger. But in 2005, five previous CDC directors wrote Gerberding a joint letter expressing their concern about what was happening to the agency.

-- A 2004 medical journal article co-authored by Gerberding said obesity was about to overtake smoking as the No. 1 cause of death in the United States, but CDC officials later reported they had overstated the increase in obesity-related deaths by about 35,000. The mistake was blamed on a computer software error.

-- After Hurricane Katrina in 2005, the agency was criticized for being slow to respond to survivors' complaints about formaldehyde fumes in trailers that had been provided by the government.

-- In 2007, she was criticized for going along with the White House's editing of her Senate testimony on the impact of climate change on health, which involved deletion of key portions citing diseases that could flourish in a warmer climate.

UPDATE: The Daily Kos parties as Julie Departs.

and

CDCChatter.net, unofficial hangout of CDC employees seems to breathing a collective sigh of relief. A few quotes:

So many takes, so little time. But the one I--and I dare say others--have found to be the most egregious and damaging is the placement of people into management positions that have absolutely no business being managers, and all the widespread fallout related to it. For example, being a good scientist doesn't automatically qualify someone as good manager material (nor vice versa, of course). Yet such square pegs seem to have been REPEATEDLY pounded into way too many round holes during Gerberding's tenure, to the detriment of many good people and amazing scientists, educators, analysts, programmers, etc. And really, "detriment" nowhere near captures the extent of the impact some have had to endure (myself included); in these cases, "destruction" is more than fair. Moreover, they often KNEW they were doing it. Even in the face of mounting internal and external scrutiny, mass staff exodus (either completely out of the agency or fleeing in droves from certain areas/managers within CDC to another), EEO complaints, direct staff protest, and so on, highly questionable people (to put it lightly) have been put in charge time and time again. As a result, I've painfully observed and myself experienced divisions, sections, teams and, most tragic of all, people, literally come apart at the seams.

Indeed it was the placement of people in key positions who had no background in the science and purpose of public health. An inordinate amount of attention was paid to centralizing decisions that effectively marginalized the judgement and experience of experienced qualified experts. Basic knowledge of public health functions was not a core value of the reorganization. It was more about creating endless levels of "executive" and other boards that have resulted in nothing of any matter happening at all. Enormous expenditures were engaged to centralize goals, dialogue, and decision making that would have been best left to those closest to the real work of this agency. At a time when inovative, young companies were moving towards flat hierarchy structures, the reorganization aimed to create a multi-layered structure that protected the power of the director and marginalized the highly trained (from new hire to experienced oldsters) who became "content experts" for communication strategies and the like.

Ding dong the witch is dead...
When every dictator falls the new leaders must clean out those who collaborated with the fallen regime. All JLu's Yes-men must be swept out and take the Coordinating Centers, Goals, SBU, and SSPU with them.

For six years, Julie has been the Great OZ, with all the smoke and fire. She goes no where, does nothing, without the Wizard behind the curtain- William Gimson. Bill, who just happens to have a Masters in Business Administration. Ironic how "Futures" took a "business" like structure, with some perverse modifications. How many examples do we need, before we realize that Julie was just the "face", while Bill was the "power"?
I hope that who ever come into this office, has a broom and sledge hammer. Dismantle the Julie-Bill (et al) "management" clones along with the deeper and wider silos of Futures. Knock down the Centers. While at it, remind the Information Technology people of their purpose, who they work for and that without the clients, they have no reason to exist. Same can be said going up the "food chain".

"Ding-dong..." isn't right. Its been, "Ignore that man behind the curtain!"

January 9, 2009

January 2, 2009

Jett Travolta 1992-2008

Our heartfelt condolences to the Travoltas.

John Travolta's son dies in Bahamas

NASSAU (Reuters) – The teenage son of actor John Travolta died suddenly on Friday during a family vacation in the Bahamas, according to the family's lawyer.

Jett Travolta, 16, suffered a seizure at his family's vacation home at the Old Bahama Bay Hotel on Grand Bahama Island, attorney Michael Ossi said.

Attempts were made to revive him, but he died at the scene, Ossi said.

Jett, who had a history of seizures, was the eldest child of Travolta and his wife, actress Kelly Preston. They also have a daughter, Ella Blue, who was born in 2000.

The only question harder than, "how do I live with my child who has autism?" is "how do I live with out him?"

UPDATE: The New York Post on Jett's autism, medical treatment or lack there of.

I earnestly hope that this didn't happen because Jett's seizure disorder was not treated. It is bad enough that Scientology does not recognize autism as anything other than an psychosomatic expression of some sort of moral weakness, if it also prevented his family from giving him needed seizure meds, as it has with others, I pray that this will be a wake up call to those who adhere to its practice.

Scientology has hurt a lot of people and I truly hope Jett was not another one of their victims.

UPDATE: Reuters is reporting that Jett had been on Depakote but was taken off. Chandler is not a child with seizures so I don't know enough about these meds to comment. Perhaps one of my readers with more experience on the subject might.:

"Travolta's lawyers, Michael Ossi and Michael McDermott, were quoted on Sunday as saying Jett apparently suffered from grand mal, a type of epilepsy marked by convulsions and loss of consciousness.

He was on an anti-seizure medication called Depakote for several years, Ossi and McDermott told the celebrity website TMZ.

They said the drug was suspended after it lost its effectiveness amid concern about side effects, however, and Jett had been suffering about one extremely serious seizure a week".

Update:

The autopsy is in and Jett died of a seizure. He has been cremated and will be laid to rest in Florida.

No doubt this will only be the beginning of intense scruteny into the Travolta's parenting decisions and the part that Scientology may have played in choosing not to treat Jett's seizures at the time of his death, and the family's public denials of Jett's autism, but I will leave that to others to hash out.

For now, I just want to reiterate my sadness for the family at loosing their beautiful boy.

I am so sick of our kids dying.

Glutamate and Autism

On Age of Autism today,John Erb has a very good post on the role of glutamate in vaccines, and in food in the form of MSG, and autism. Specifically the rapid brain growth seen in children like my Chandler and his big beautiful giant head. Everyone in the vaccine debate needs to read it, along with the information Carol Hoernlein has posted on MSGTruth.org.

I left this in the comments section:

How odd is it.... and it is odd.... that pretty much everyone in any health debate in this country, whole heartedly agrees that the western lifestyle and diet is ruining the health of Americans and is doing the most damage to American children.

Yet when you start to parcel out what specific substances might actually be doing the damage, big obvious compounds known and sometimes even specifically used to have neurological and immunological impacts, (mercury, aluminum, glutamate, etc.) suddenly no one wants to investigate?

Truly odd.

I have a very clear memory of watching tv with my mother around 1976 when we saw a commercial for Accent Flavor Enhancer - "Brings Out The Flavor Of Food!". I must have said something to the effect of, 'hey mom... lets get that." (apparently I was a foodie from quite a young age). She explained that Accent was not a spice mix that actually makes the food taste better, but a chemical called monosodium glutamate that acts on your brain to make it think the food tastes better, and that we couldn't buy it because it gave her those horrible migraines that sent her to bed for days.

So I have known since I was seven that glutamate was a psychoactive substance that was my super mom's kryptonite, but even after 30 plus years of full knowledge that this stuff does things to people's brains, and even though it is ubiquitous in our society, we want to avoid looking at the actually damage it is doing in the brains of our beautiful babies?

I am all about the mercury theory, but just as we don't know what these vaccines are doing in combination, we don't know what these vaccine ingredients are doing in combination.

We cannot ignore logical lines of causation inquiry to promote another. We need to know the whole truth.

I will be interested to know Mr. Erb's plan of attack against MSG and how we can be of service.

I think this might be a fight my mom is interested in too.

On my posts on Genetically Modified Foods and their inflammatory properties, I asked the question, 'does the Specific Carbohydrate diet work for Chandler not only because it removes sugars that feed intestinal yeast, but also because it removes GMO's that potentially damage the GI track create inflammation'.

I can ask the same question about glutamate. Does the SCD work for Chandler because the restriction of processed foods from his diet (along with abstaining from vaccines) has cut off sources of glutamate to him?

Have I mentioned that one of the things that has given Chandler such a boost in the last two months is that we started giving him GABA, which has a positive impact on overly glutamated brains?