
I love you Chandler P.
News and commentary on the autism epidemic and my beautiful boy who is living with autism.
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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
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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
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?
“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..
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)
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.
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!"
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.
"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".
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.
December 27, 2008
Immunization concerns
By Kira Rubenthaler
Ashland Daily Tidings
More than a quarter of Ashland parents choose not to vaccinate their children, and the government wants to know why.
The Centers for Disease Control and Prevention is holding a community meeting Jan. 10 in Ashland to help its Immunization Safety Office prioritize vaccine safety studies beginning in the next five years.
Ashland joins Indianapolis and Birmingham, Ala., as three U.S. cities the CDC is tapping to solicit the public's concerns about vaccines.
"I think what's important about this is it's the government coming out and asking people's opinions, asking their advice, asking them to help set policy," said pediatrician Ben Schwartz, a senior scientific advisor in the Department of Health and Human Services' National Vaccine Program.
Ashland was chosen partly for its high rates of unvaccinated children, Schwartz said.
"We wanted to learn from people who had more concerns about vaccines," he said.
The CDC held the Birmingham meeting Dec. 13 and will hold the Indianapolis meeting Jan. 17 before the National Vaccine Advisory Committee's Vaccine Safety Working Group convenes in Washington, D.C., Feb. 4 to hear the results.
Ashland's meeting will take place Saturday, Jan. 10, from 9 a.m. to 4 p.m. at the Ashland Middle School commons. Registration and a continental breakfast begin at 8 a.m. and lunch and refreshments will be provided.
Attendees must live within the city limits and be at the meeting all day. Participants qualify for a $50 stipend, which Schwartz said is a "reflection of how we value people's time" and is also aimed at recruiting a cross-section of the community.
The CDC hopes for about 75 attendees, and people must register in advance by calling facilitator The Keystone Center at (800) 219-6670 or going online to www.keystone.org/registration/ashland. For more information, including a link to the draft scientific research agenda, go to www.hhs.gov/nvpo/nvac/publicengagement.html.
High rates
While Birmingham and Indianapolis are more representative of typical communities, Ashland stands out with its "substantially higher" rates of unvaccinated children, Schwartz said.
Oregon requires schoolchildren to be vaccinated against 11 diseases, but parents can opt out by signing a religious exemption, which defines religion as "any system of beliefs, practices or ethical values."
Statewide, 3.7 percent of kindergarteners had exemptions in 2007, while 28.1 percent of Ashland kindergarteners were exempt, according to numbers provided by the Jackson County Health Department.
Ashland's numbers get even higher when broken down by school.
For 2007, 66.7 percent of students at Willow Wind Community Learning Center were exempt, while 65.9 percent of Siskiyou School students and 45.7 percent of John Muir Elementary students had exemptions, according to reports submitted to the health department.
At Walker Elementary, 23.4 percent of students had exemptions, while 15. 3 percent of Bellview students and 14.8 percent of Helman students were exempt.
Belinda Brown, Ashland's school nurse coordinator, said the numbers can be somewhat misleading because if a parent signs a religious exemption for one vaccination but follows the remaining requirements, the child is counted as an exemption.
Regardless, the numbers are still high, "and they're higher than we want them to be," Brown said.
A variety of reasons contribute to the high exemption rates, Brown said.
A small group faces barriers to vaccinating, such as not knowing where to get the shots or lacking money or transportation, but the school works hard to help parents overcome these obstacles, she said.
Some parents are adamantly opposed to immunizations for personal or religious reasons, Brown said, and many are worried about vaccine safety.
It's important to respect parents' choices, but the number of exempt students is troublesome, Brown said.
"It's been an area of concern for the school district and the community at large, and we've been thinking of ways to improve that," Superintendent Juli Di Chiro said at the Dec. 8 school board meeting.
If there were an outbreak of a vaccine-preventable disease, unvaccinated students would have to stay home until it passed. Meanwhile, the school district would be required to provide five hours of one-on-one tutoring each week to every quarantined student, Di Chiro said.
When parents want to sign an exemption, the school tries to make sure they understand the risks of not vaccinating, Brown said.
"It's our job to make sure everyone has the information they need," she said.
Studying the reasons
Information is key for Kaitlin Newman, Shauna Gargus and Joel Carrick, nursing seniors at Oregon Health and Sciences University who are studying Ashland's high exemption rates and how to bring the numbers down.
They have contacted community leaders and school administrators and designed an informational pamphlet, and they talked about their project at the Dec. 8 school board meeting.
Besides running the risk of contracting a serious disease, unvaccinated children also jeopardize others, the students said.
When large segments of a population are not vaccinated, it causes a drop in protection provided by immunizations, a loss of "herd immunity," the students said.
For instance, the elderly and newborn babies are susceptible to pertussis (whooping cough), said Jim Shames, the medical director for Jackson County's Health and Human Services and adviser to the students.
Until the baby is old enough to be vaccinated for pertussis, its only protection is for people around it to be immunized, he said.
"It really takes a community to protect a child," Shames said.
Some children can't be vaccinated for medical reasons, and people with cancer, AIDS and other illnesses that compromise the immune system are also susceptible to catching vaccine-preventable diseases, said OHSU nursing instructor Linda Brown.
Immunizations have largely eradicated many diseases — such as mumps, polio and measles — in the United States, so people don't see their devastating effects and don't think they need to vaccinate, the students said.
But as a tourist town with visitors from around the world — including places where these diseases still exist, Ashland is especially susceptible for an outbreak, the students said.
Many parents choose not to vaccinate because of concerns about reactions to immunizations, but serious reactions are rare, the students said.
"The most common reaction to a vaccine is a sore arm," Gargus said.
Some concerns, like the possible link between vaccines and autism, are unsubstantiated, the students said.
"There's a lot of fears that parents have that a lot of people believe but aren't scientifically proven to be linked to the vaccine," Carrick said.
Parents don't always give equal concern to the complications from the diseases the vaccines aim to prevent, Linda Brown said.
"There's a balance between the risks of disease and the risks of side effects," Shames said.
As a parent, it can be hard to know if you're doing the right thing, Linda Brown said. "And so many of the families in Ashland are very concerned about trying to do the right thing," she said.
A parent's view
Julie Freed is one of those parents.
For her, doing the right thing was not vaccinating.
After a "huge amount of research," Freed, a homeopathic and nutritional consultant, chose to abstain from immunizations for her daughter.
Arianna Marshank, now an eighth-grader at the Siskiyou School, has been vaccinated for tetanus, but has not received the other recommended childhood immunizations.
Freed has signed the religious exemption and has never had any trouble getting her daughter into classes or camps, she said.
Her decision to not vaccinate had a lot to do with the timing of the shots and the amount of them, as well as the potential for side effects, Freed said.
"It's more just the safety aspect and the respect for the immune system developing on its own and not inundating it with chemicals," Freed said.
The amount of vaccines recommended for young children is a challenge to an undeveloped immune system, she said. In addition to the preservatives and chemicals in the vaccines, some of them don't seem necessary at such a young age, she added.
She has also seen adverse reactions to vaccines.
Although nothing has been proven, links suggest that vaccines may cause learning disabilities, autism and SIDS, Freed said. Complicating the issue, there's evidence on both sides to argue for and against vaccinations, she added.
"We don't know. We don't know what these chemicals do to our bodies," Freed said.
Now that her daughter's immune system has developed and she's healthy and strong, feeding her wholesome, organic food and making sure she gets fresh air and exercise "are my choices at keeping illness at bay," Freed said.
Her friends span the range of vaccination theory, with some not vaccinating at all, some who selectively vaccinate, some who don't adhere to the vaccination schedule and some who follow all the recommendations, Freed said.
It comes down to personal choice, and it's important to make an educated decision, she said.
Freed is not opposed to vaccines, but "I do feel like people feel like they don't have a choice," she said.
Whichever option parents pick, it's not an easy decision, Freed said.
"I'm not going to lie. I've had sleepless nights," she said. "We all worry about our kids and are concerned about our kids. And we all want to do what's best for our children."
Kira Rubenthaler can be reached at 482-3456 ext. 225 or krubenthaler@dailytidings.com.