The IACC (NIH’s Interagency Autism Coordinating Committee) added the existence of co-occurring conditions associated with autism in the strategic plan for autism research back in 2011, acknowledging the need to better understand the scope and cause of these conditions, and the need for multidisciplinary heath assessments and effective treatment guidelines. But to date, far too little progress has been made. In an effort to address this urgent unmet need the IACC has invited Dr. Perrin, President of the American Academy of Pediatrics, to attend the July 9th meeting to discuss what can be done to improve health care for children with autism. This is your chance to let them know what you think!
Those in the autism community understand that many of the behaviors present in children with autism, especially those that are self-injurious, are often related to physical pain and are treatable and preventable with appropriate medical interventions. Therefore, every effort must be made to increase the medical community’s knowledge and awareness of these co-existing medical conditions.
We've finally left April and its namby pamby feel good (not that we don't like feel good stories at AofA) blue lit "awareness" behind. It's fitting that May first was MAY DAY - the call of distress. Here's a story from Generation Rescue, our sponsor, and provider of the Rescue Family Grant. This grant program puts dollars into familes' hands and medical treatment. And it is quietly changing lives for the better. Thank you to Jenny McCarthy, Candace MacDonald and the entire GR team. You can meet Jenny and bask in the GenRescue Lounge at the Autism One Generation Rescue conference in Chicago later this month. The cost is just $50 for a five day conference if you register by May 6.
Listen to what a Mom said about what the grant has done for her son:
Less than a month into starting biomedical treatment, the Generation Rescue grant recipients are making amazing progress!
"P's teachers were thrilled today when I came to pick him up from school. They said it was the best day he's had in a long time. P's expressive and receptive language is just taking off. He is able to express anything he wants. We're over the moon! Seeing these positive changes makes us so grateful for this opportunity."
-V, Mom to P
To find out more about the Generation Rescue Family Grant program and to apply to start treatment, please visit Gen Rescue.
The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.
Coalition of SafeMinds Hosted a Congressional Autism Educational Forum on April 12, 2013 in Washington, DC. The topic Was Environmental Factors - What are They and What Do They Matter? Goal for Congress is to move from Autism Awareness to Autism Action. Eric Uram opens the briefing. Slides and materials available at safeminds.org
“New" study from DeStefano et al., only rehashes a flawed 2008 data set - says SafeMinds
WASHINGTON, DC - A new book chapter on statistical methods in Recent Advances in Autism Spectrum Disorders by University of Northern Iowa researchers, DeSoto and Hitlan documents major methodological flaws in the data set said to disprove the link between Thimerosal-preserved vaccines and autism by Price, et al. More recently DeStefano et al.  used the same data set while attempting to disprove a link between the number of vaccines and autism.
“Both researchers tested whether any increased risk of autism was associated with increased exposures via vaccination. To do so, they must compare different levels of exposure. They failed to do so when they matched cases to controls on birth-year and HMO. Birth-year, by itself, defines exposure level and HMOs further ensures similarity guaranteeing cases and controls were nearly identical on the exposure,” said lead author Dr. Catherine DeSoto. “This is a design flaw called overmatching, it forces cases and controls to be artificially similar and renders the results invalid.”
The number, type and timing of vaccines US children receive is a function of birth-year. Formulations purchased and administered would be the same within a given HMO.
“By matching on birth year and HMO, they eliminated the variability right from the start,” said Sallie Bernard, President of SafeMinds. “Here’s a perfect example of the cascading impact from problem data analysis. The same statistical flaws in Price’s 2010 research resurface in De Stefano’s 2013 research.”
“Once again, media reported exactly what CDC released last week without critically reviewing the information,” said Eric Uram, Executive Director at SafeMinds.
Our pharmacy offers a:
We use only the finest quality chemicals and equipment to prepare our patients’ compounded medications and nutritional supplements. Customizing medication and nutritional supplements for our customers allows them to achieve their unique health goals.
Around the end of the year, the American Academy of Pediatrics gave the children of the world their gift by expressed support for the World Health Organization’s request for an open-ended exemption for the continuing use of mercury-based preservatives in vaccines.
AAP's support for this policy signals a dangerous disregard for children’s health and sets a precedent that could reverberate throughout medical and chemical policy initiatives - rolling-back positions taken due to safety concerns without proof of safety.
Under the language in the treaty (as developed by WHO and supported by the AAP) no requirements would exist to require labeling of active or inactive mercury-containing preservatives in products and nothing either from FDA or WHO prevents mercury-preserved products from once-again appearing on the shelves of our markets.
What is Post Hope?
Post Hope is an initiative that provides share-friendly social media cards that contain messages of hope, support, and critical information, such as autism safety tips, autism facts, and early signs of autism.
Over the years, SafeMinds has established a professional relationship with the House Committee on Oversight and Government Reform (COGR) due to its ongoing interest in autism. Since 2000, six SafeMinds board members have testified before COGR, its precursors or subcommittees, in hearings regarding mercury, vaccines and the autism epidemic. The most recent hearing took place on November 29, 2012. SafeMinds was asked to testify and Mark Blaxill represented us. We consider this hearing to be a positive step forward. The feedback on the hearing that we received both publicly and privately was overwhelmingly positive and supportive. Due to the efforts of parents who brought their injured children to the hearing room, Committee members got a firsthand look at the devastation impacting hundreds of thousands. Several Representatives commented on how many constituent families had been in touch with them about the hearing – many of them mentioning vaccine injury specifically. Members were able to see for themselves how ineffectual Federal agencies have been. Vaccines and autism were linked repeatedly in the congressional record.
Still, critical comments have surfaced about SafeMinds and this hearing. Those which deserve a response have come from Dr. Brian Hooker and Jake Cosby, two members of the autism community whose long-standing contributions to critiquing the government's response to autism's causes have been valued and important. When SafeMinds became aware of their allegations that our organization inappropriately represented ourselves and used undue influence with congressional staff at the COGR to create desired outcomes for this hearing, we immediately began an investigation.
Brian spoke to us directly and expressed his concern that we maneuvered to block him from testifying, which we did not do. SafeMinds spoke directly with the Congressional staff responsible for organizing the recent autism hearing to ensure that there had been no misunderstanding. Our contact there assured us that nothing undue or untoward occurred in conversations between the Committee and SafeMinds. He concurred with our internal view of events that at no time did SafeMinds misrepresent our organizational affiliations to congressional staff, nor did we or any of our affiliates seek the recision of Brian Hooker’s invitation to testify before the COGR. We did make a request that SafeMinds be allowed to testify on the panel.
Jake has criticized us for going light on the vaccine issue. Mark covered vaccines in his written testimony hammered the government on its denial of the epidemic in his oral testimony and reintroduced these issues pointedly during the questioning by Committee members, calling them the “Great Unmentionables, vaccines and mercury, as causation factors”. Committee members had been briefed by many members of the community including SafeMinds and Brian, so they knew what to ask. Members did an incredible job and we thank them.
Managing Editor's Note: We are proud to share with you that Lee Silsby Compounding Pharmacy in Cleveland, Ohio, is supplying the Leucovorin for this study below. Alan Israel, lead pharmacist, has been a leader in our community to ensure safe, effective biomedical treatments for our children. On a personal note, Lee Silsby was the first pharmacy I ever used for girls' back in 2001 and I've never forgotten their customer care and attention. Thank you, Alan and the staff at LS. KRS
A Folinic acid intervention for ASD
Dr. Richard Frye is conducting an exciting study on the impact of a daily treatment of folinic acid on ASD-related symptoms. The hypothesis is that an folinic acid will improve folate metabolism in the brain, oxidative stress and mitochondrial function in children with autism, resulting in specific health improvements for patients with autism, a discovery that would be very welcome by the autism community.
Lee Silsby Compounding Pharmacy has been selected as the sole supplier of Leucovorin (folinic acid) for the study. Alan Israel, R. Ph., the lead pharmacist at Lee Silsby, stated that the biomedical community can benefit greatly from more research and that he is willing to help out as much as possible. To his credit, Lee Silsby Compounding Pharmacy has agreed to provide folinic acid for both the double-blind placebo-controlled portion of the trial as well as the open-label portion of the trial at no cost to the patients in the trial.
Dr. Frye’s current proposal can potentially provide strong evidence for a folinic acid intervention and will provide insight into the subgroups of children with ASD who would benefit from folinic acid. The primary goal is to improve language for those with ASD (which is measured by the receptive and expressive CELF language index). Preliminary studies have suggested that a folinic acid intervention is associated with receptive and expressive language improvements. For example, in a case-series of 44 children with ASD and the folate receptor alpha autoantibody, treatment with high-dose folinic acid (2 mg/kg/day divided twice a day; maximum dose 50mg / day) improved communication, attention, and stereotypical behavior in many children with ASD.
Folate is an essential B vitamin required for normal neurodevelopment. Defects in folate metabolism can cause secondary physiological abnormalities, some of which have been associated with ASD. In this study, Dr. Frye and his team aim to study several physiological mechanisms associated with folate abnormalities in children with ASD: the folate receptor alpha autoantibody that reduce folate transport across the blood-brain barrier, low glutathione redox status, mitochondrial dysfunction and genetic polymorphisms. Most importantly, ASD patients with these physiological mechanisms have shown improvement in ASD symptoms with a folinic acid intervention.
Our friends at Alex and Ani have designed a beautiful charm in honor of all of us who are affected by autism. It is available exclusively at Alex and Ani retail stores and online at http://alexandani.com.
20% of all sales will be donated to NAA to support our programs for families affected by autism.
From the Safeminds.org newsletter:
By Eric Uram, SafeMinds Executive Director
So what happened in Geneva at the negotiating session for finalizing language contained in UNEP's international mercury treaty? In particular, when it came to making real headway on addressing the sources of mercury associated with over-exposed kids? In brief: not much. Political will putting people first took a back seat to special interest influence about making profits pretty much across the board.
To give some background, the process for negotiations, a treaty is similar to the lawmaking process here in the USA, UNEP Treaty negotiations allow everyone access to the process.
Just as with federal and state legislatures, access to government officials outside of the negotiations is allowed, and written and face-to-face communications took place in many countries where interests had a presence.
Similar to elected legislators, only treaty delegates can add, amend or remove treaty language. Intergovernmental organizations (similar to federal or state agencies) including UNIDO, UNITAR, WHO and other UN affiliates and the UNEP Treaty Secretariats get greater access (and influence) with the delegates, but are still prohibited from participating in negotiations on any specific language.
The process considers all others, including non-government organizations (NGOs, such as SafeMinds) only as observers, allowing us to monitor the process, but allowing extremely limited opportunity to address the delegations.
The negotiations approval process uses consensus instead of a majority rules approach. Any change in language can only occur under consensus from all parties - so adding or removing language requires everyone present to allow it. This means one nation could veto any proposed addition or deletion of language even if everyone else wanted it.
Managing Editor's Note: From our friends at National Autism Association who are always looking out for the health, well being and safety of our children, whether tots or adults. Read their white paper, Behind Closed Doors: What’s Happening to Students With Autism in America’s Public Schools? The case for cameras in self-contained classrooms. Many of you will recall that it was cameras on the school bus that proved that the bus aide was harming my daughter Bella and lead to an arrest and conviction. From the NAA Blog:
We need your help.
The National Autism Association has been the leading national organization addressing the critical safety needs of children most severely affected. We’ve made progress on some issues, such as wandering-related initiatives. Now, we need to tackle the problem of student abuse.
At NAA, we follow trends via daily news alerts to see if problems facing families affected by autism are on the rise. In our view, the number of reports of students being subjected to abuse, particularly in isolated self-contained classrooms, highlights a growing area of grave concern.
The issue suddenly became front-burner in south Texas about two years ago when Fox News 26 special projects reporter Greg Groogan began reporting on this dangerous trend. An award winning journalist and the father of an affected child, Greg has documented more than half a dozen confirmed cases of abuse in the Houston area alone in that timeframe.
These reports include:
Families are taking notice, and they are talking to their legislators in Texas.
Building on this momentum, disability advocates in our state have been working toward legislation that would require cameras in self-contained classrooms in response to multiple media reports of confirmed abuse in these educational settings. The Texas legislature meets only every two years for 140 days. If you have legislation you want passed or amended, you have a very short window and the pace is unbelievably frantic.
If we are going to get this done in Texas, now is the time.
It’s no surprise to parents of children significantly affected by autism that their kids are uniquely vulnerable to abuse due to many factors: classrooms with closed doors, often inadequate training for teachers and aides, inappropriate staffing levels, children with sometimes challenging behaviors who may not be able to report what happens at school. The explosion in autism rates has brought some school districts to the brink of disaster as they struggle to catch up with rapidly increasing numbers of students who have a high level of need. For many families who have no insurance coverage for autism-related therapies, the public school is the only resource they have to help their children. It’s no wonder IEP meetings have become war zones as caregivers vie for scarce resources. Even squeaky wheels often don’t get the grease. Read more at the NAA site.
SafeMinds Response to 1/16/2013 IOM Report:
IOM fails again to pursue science on vaccine injury
The January 16, 2013 Institute of Medicine report, The Childhood Immunization Schedule and Safety: Stakeholder Concerns, Scientific Evidence, and Future Studies, repeats the IOM pattern of failing to call for the appropriate scientific research to be conducted on vaccine-induced autism. The report ignores the fact that for 6 of the 7 vaccines administered in the first year of a child’s life (HCV, DTaP, PCV, Rotavirus, IPV, and Rotavirus), there has never been a study of autism prevalence in children who received the vaccine versus children who did not receive the vaccine. These studies were not performed before each of these vaccines was approved, and have not been performed since approval. The IOM report admits that such a study is the gold standard of science, yet does not call for studies. The IOM report ignores the fact that for the 7th vaccine (Hepatitis B), there has been only one such study and that this study found a 3-fold increase in autism risk for children who received the vaccine in the first month of life. The autism epidemic dates to the 1988 birth cohort per an EPA study, the same birth cohort which was administered the Hib conjugate vaccine (an entirely new class of vaccine), and an October 2011 published paper describes a plausible mechanism by which this new type of vaccine could have caused the autism epidemic. Yet the IOM report ignores the fact that autism prevalence has never been studied for the Hib conjugate vaccine in children receiving versus not receiving this vaccine.
Why would the IOM not call for the obviously necessary research to be conducted? Safeminds believes the answer lies in an institutional bias within IOM towards protecting the vaccination program. Leaked transcripts of initial deliberations during the 2004 IOM Immunization Safety Review show that the IOM chair told the committee that they would not ever come down that autism is a true side effect of vaccines; subsequently, the IOM 2004 report had the audacity to call for a halt in further research into a vaccine-autism association. The IOM 2004 report was not based upon conclusive research, but instead appeared policy-driven based on leaked transcripts. Now in this January 2013 report, intended to lay the groundwork for future research on vaccine-safety, the IOM instead advertises the benefits of the current testing system which has failed to conduct the necessary research. While recognizing that “randomized controlled trials are the gold standard for clinical research”, the IOM committee does not call for these trials. The IOM committee also dismisses the feasibility of retrospectively comparing vaccinated vs unvaccinated children citing that population groups often containing unvaccinated children, such as religious communities, would yield sample sizes too small for valid results. This short-sightedness ignores the more obvious solution of utilizing the estimated 1-2M home-schooled population for such a study.
By Anne Dachel
On November 29th a congressional hearing will again address autism. The simple truth is, we can’t afford to bring up the issue, let lots of people talk and then go home with nothing resolved. Something needs to be done about an affliction that is decimating our children and that officials seem unable to understand or to stop.
The advocacy group SafeMinds asked parents to contact their Congressional Representatives and urge them to attend the hearing.
SafeMinds also asked us to consider four questions regarding how the government is dealing with autism:
1) Do you think the federal government is doing enough about autism?
2) Do you think the Interagency Autism Coordinating Committee has helped your family?
3) Do you think federal policies have prevented new cases of autism?
4) Have you seen results from the government's hundreds of millions of dollars in research spending?
Please remember we’re asking these questions in 2012. The autism numbers have been steadily
increasing over the last two decades to what can only be described as an epidemic rate while
mainstream medicine and U.S. health officials have stood by helplessly, unable to tell us the cause
or the cure for autism. There’s nothing a mainstream doctor can tell a new mother whose baby
was born healthy and is developing normally that will ensure that this child won’t also end up on
the autism spectrum by age two. On a daily basis we’re given news reports where experts
solemnly tell us that all the autism is merely better diagnosing and an expanded definition of a disorder that’s always been around.
In 2006, the Combating Autism Act was passed by Congress and signed into law by President
George W. Bush. This legislation authorized nearly a billion dollars over five years for screening,
education, services and research. The act created the Interagency Autism Coordinating Committee
chaired by Dr. Thomas Insel. The act was reauthorized in 2011.
Here’s what the advocacy group, Autism Speaks, had to say about the reauthorization:
“The new law continues the federal government’s commitment to autism research, services and
treatment at current levels, authorizing $693 million over the next three years. The original act
provided nearly $945 million over five years. Since its passage in 2006, significant advances have
been made in determining potential causes for autism as well as promising new early intervention
behavioral treatments. By signing CARA into law, President Obama has ensured the federal
government’s commitment to autism so that crucial research can continue unimpeded for the next
So how concerned is Congress about autism? Besides the CAA, what have they done to address
a disorder that has claimed a million children in the U.S.? How interested are they in
the heated controversy over vaccines and autism?
This is some of history of how the Congress has dealt with autism.
In 2000, Representative Dan Burton held a six hour hearing on autism and childhood vaccines.
Burton talked about his grandson’s regression following his routine vaccinations. Other legislators sounded equally concerned about the possible role vaccines could play in the development of autism. Parents testified about the difficulties of raising an autistic child and about the link they saw between vaccines and their child’s autism. There were calls for adequate studies to discern any causal relationship. Dr. Andrew Wakefield was there presenting a report on his discovery of a new bowel disease he had observed in autistic children. Dr. John O’Leary from Coombe Women’s Hospital in Dublin Ireland testified on the presence of measles virus in the children with autistic enterocolitis.
THURSDAY, NOVEMBER 29th AT 2:00 PM
RAYBURN HOUSE OFFICE BUILDING - ROOM 2154
PARENTS AND ADVOCATES:
PLEASE ATTEND, GET YOUR CONGRESSMAN TO ATTEND AND SPREAD THE WORD. COME TO WASHINGTON. BRING YOUR CHILDREN.
On Thursday, November 29th at 2:00 pm, The House Committee on Oversight and Government Reform will hold a hearing regarding the federal response to autism over the past decade. EBCALA, SafeMinds and many individual parents have worked hard to make this happen. Our understanding is that two panels are scheduled - one of government witnesses and one of public witnesses, including SafeMinds.
Do you think the federal government is doing enough about autism?
Do you think the Interagency Autism Coordinating Committee has helped your family?
Do you think federal policies have prevented new cases of autism?
Have you seen results from the government's hundreds of millions of dollars in research spending?
If you answered "No" to these questions, here's what you can do to help:
Editor-in-Chief, Chicago Sun Times
Dear Mr. Kirk
I am writing in regard to “Every Child By Two’s” campaign asking “parent advocates” to write to you and request that actress/author Jenny McCarthy not be allowed to have a column in your newspaper.
Every Child By Two (ECBT) is primarily funded by vaccine makers whose products have fallen under criticism for inadequate safety by Ms. McCarthy. In 2010 (the most recent year for which funding information is available), Wyeth vaccines provided $307,000 to ECBT and Sanofi Vaccines provided ECBT with $245,171. Furthermore, ECBT’s board members include Dr. Paul Offit – vaccine industry spokesman and co-inventor of the Rotavirus vaccine that has been estimated to have earned him in excess of $10 million.
These funding sources were not disclosed in ECBT’s letter urging the media’s censorship of Ms. McCarthy. Instead, ECBT presents itself as an unbiased public service organization.
ECBT’s states on its home page:
“11,000 children are born every day. We must vaccinate all of them on time.”
This statement is an example of ECBT’s disregard of the established medical fact that all individuals are not tolerant of all pharmaceutical products. The federal government has compensated families over $2 billion for vaccine injuries and deaths, and thousands of Americans have reported serious adverse affects to VAERS (the government’s Vaccine Adverse Event Reporting System).
In response to the growing needs of families and professionals impacted by autism, we have assembled the “best of the best” in terms of conference presenters and relevant topics.
From cutting-edge research of environmental toxins to dietary interventions, legal and legislative strategies to estate planning, the world’s most renowned experts will gather to share their knowledge and expertise with parents and practitioners.
We have just launched a brand new web site for our 2012 conference where our featured speaker will be the inspiring Eustacia Cutler, mother of Temple Grandin.
Our conference will be held at the beautiful, and Autism-Friendly, TradeWinds Resort on St. Pete Beach, Florida. November 8-11, 2012.
Managing Editor's Note: Thank you to National Autism Association for spearheading this study so that doctors around the globe wake up to the ravaging effects of the autism epidemic. We all do our best to shed light on the tragedies (and triumphs) of daily life with a child on the spectrum - but doctors tend to listen best (insert cough here) to formal studies rather than to informed parents. If YOU have a child who wanders - or know someone who needs help in their household, we implore you to visit AWAARE.org.
Boston, MA – A new study published today in Pediatrics found that approximately half of children with autism wander from a safe setting, a rate nearly four times that of their unaffected siblings. The study, conducted by the IAN Project at the Kennedy Krieger Institute in Baltimore, is the first research effort to scientifically validate that elopement is a critical safety issue for the autism community. Advocates hope its findings will lead to much-needed safety measures and support for families struggling with the issue.
The study’s key findings showed that:
In 2010, the National Autism Association (NAA) sounded the alarm on the wandering issue when it made a statement before a federal committee outlining the need for wandering data and federal resources. “We began seeing a rise in wandering incidents and fatalities,” says NAA President Wendy Fournier.
According to NAA, accidental drowning caused 91% of wandering deaths from 2009 to 2011, and 23% of total deaths happened under the care of someone other than a parent. “This is not a ‘bad parenting’ issue,” says Fournier. “We hear from parents who sleep next to their child’s bed at night, or in front of the door. They live in constant fear of the worst.” Fatalities in 2012 have doubled those of last year, and in the last two weeks alone, three children and one teenager with autism have died after wandering from safe environments.
- Karma and its members pledge to support autism recovery and awareness charity through grant program and volunteer work –
Los Angeles, CA – August 23, 2012 – The Karma Foundation, an exclusive social membership organization that combines the benefits of executive networking and philanthropy with luxury lifestyle events, has added Generation Rescue to its growing list of charity and non-profit beneficiaries.
The Karma Foundation has already donated over $25,000 to Generation Rescue through proceeds from its annual Kandyland event. It will now become a Corporate Sponsor and participate in the charity’s grant program.
To date Karma and its members have sponsored ten families, providing their children medical assistance and services which would otherwise be unaffordable for recovery of autism spectrum disorders. Karma will continue to sponsor additional families whose children need this assistance through future event proceeds and member donations.
Marvin Epstein, Karma Foundation’s executive vice president of Business Development and Philanthropy, said: “Karma prides itself on long-term relationships with the charities it supports, our ‘philanthropy legacy’ strategy. We will work with Generation Rescue to ensure our donations are contributing in the most effective way possible. We believe our strategy will create a genuine and critical component to ensure the success of these organizations.”
Candace McDonald, executive director of Generation Rescue said: “We are grateful to the Karma Foundation and its members for making a commitment to support our grant program and provide treatment for families affected by autism. We appreciate the generous donations they have made, and also the lasting partnership we have begun to build together. Their ongoing unique support strategy establishes an exciting initiative to help more families and create further awareness and growth for Generation Rescue.”
Generation Rescue, led by president, Jenny McCarthy, is dedicated to the recovery of children and adults with autism spectrum disorders through medical treatments, support and guidance. Of the recent sponsorship and partnership, Jenny McCarthy said: “It’s so great to find a sponsor like the Karma Foundation, where its members truly care about the people served by the nonprofits they support.”
About Karma Foundation
Karma Foundation is a Beverly Hills, CA based exclusive lifestyle membership organization that provides its Members and Member guests with remarkable upscale lifestyle experiences that enrich their lives, expand their networks and benefit noble causes. Karma uses its global infrastructure of VIP Hosts to provide Members with the ultimate access for hospitality, nightlife, gaming, entertainment and luxury lifestyle amenities and services anytime anywhere. Karma is based on four main principles Networking, Philanthropy, Revelry & Access. More information about Karma Foundation can be found at www.TheKarmaFoundation.com.
About Generation Rescue
Every year, Generation Rescue helps more than 25,000 families affected by autism by providing education support and medical assistance, directly improving children’s qualify of life. With mentors in 38 countries around the world, services include a toll-free hotline, medical grants, parent mentors and conferences. It is dedicated to the recovery of children with autism spectrum disorders by providing guidance and support for medical treatment to directly improve the child’s quality of life for all families in need. www.generationrescue.org
(Managing Editor's Note: Last month the IACC met - and Katie Weisman presented the following public comments. Read Dan Olmsted's scathing review of the meeting along with follow up from Jake Crosby and Katie Wright.
Good Afternoon Dr. Insel and members of the IACC,
My name is Katie Weisman and I am here today on behalf of SafeMinds.
I am the mother of 14 year-old identical triplet boys, two diagnosed with PDD-NOS and one with autism. I have been a full-time advocate for 11 ½ years now. I have run a parent support group for a decade, have fundraised, have started a safety campaign, have done autism awareness training for typical kids, have lobbied for insurance, and have worked on the bill that reauthorized this committee. More importantly, I have helped three of the best, hardest working young men on the planet learn how to talk and write and read and live in their world happily. But I am here to tell you that this is all taking too long. My boys and all the people like them and all the children who are being diagnosed now, today, while we are sitting here, need answers and help now, today.
I am here to tell you why the mercury/autism connection is stronger than it has ever been. It is time to set politics aside and look at the science. Anyone who truly cares about individuals with autism simply cannot ignore mercury. For those who say that the link has been disproven, I say go and actually read the literature – it currently supports a connection by a 2 to 1 margin. The positive studies rarely make the press. Included with my comments are e-mails, obtained through the Freedom of Information Act, showing that the CDC omitted data showing that autism rates in Denmark actually dropped in 2001 after they removed thimerosal from their vaccine program. I have also included Mark Blaxill’s graphic analysis of the early Verstraeten VSD data, also obtained through the Freedom of Information Act, showing 7.6 times the relative risk of autism in children who received high thimerosal by one month of age compared to children who received zero thimerosal. This is important because, later, unvaccinated children were excluded from the study eliminating the zero exposure control group.
I have read most of the autism abstracts in Pubmed for over 4 years now, along with hundreds of studies and have followed the research for over a decade. I can tell you unequivocally that the number one, best supported, most logical suspect for autism causation is mercury and it is only being ignored because it implicates vaccines. It will not be the only cause, but it is logical to tackle mercury because exposures are often easy to avoid. With about 45,000 children a year being diagnosed with autism spectrum disorders in the US alone, based on the most current prevalence ratio, I do not believe that anything can be off the table for research.
However, thimerosal is not the only mercury exposure of concern in autism. Mercury comes from many other sources including fish, other food, dental amalgam, skin-lightening creams, fluorescent bulbs, Santeria rituals, air pollution and even tattoos. Despite recent emissions controls in developed countries, global mercury pollution is on the rise due to massive growth of industry in countries like India and China. The EPA estimates that 83% of the mercury deposited in the US is from international sources. Any candidate for causation must fit trends of exposure, and cause symptoms that make sense. There are obvious studies like those linking autism rates to mercury in the air or the number of fillings a mother had, but there have been no studies yet of total mercury exposure relative to autism. Those studies need to be done.
Safeminds was founded to raise awareness, support research, change policy and focus national attention on the growing evidence of a link between mercury and neurological disorders like autism, attention deficit disorder, language delay and learning difficulties.
We need your help! Become a Safeminds champion and spearhead outreach efforts in your area that will directly contribute to our mission of educating the community through targeted outreach, and fundraising.
Awareness Isn’t Enough, We Need Action! The prevalence of autism is rising at about 12% a year.
SafeMinds believes that most cases of autism are preventable and treatable. We demand action to protect our children.
Please contact Elizabeth Kilpatrick today at firstname.lastname@example.org.
Please join SafeMinds and the Vaccine Injured Petitioners Bar Association at a Congressional Briefing on May 18 at 10 am. The Briefing will discuss the current status of National Vaccine Injury Compensation Program (VICP) and provide legislative recommendations to address a number of serious management concerns in the program. There has been no Congressional Oversight in more than a decade. SafeMinds is requesting that Congress hold investigational hearings on the VICP and work with the community to critically evaluate the program’s failures to provide accessible relief to victims and to address ongoing concerns regarding vaccine safety.
About the VICP: In 1986, Congress passed the National Childhood Vaccine Injury Act which created the Vaccine Injury Compensation Program. The Act had three purposes:
1) Provide liability protection to manufacturers and medical personnel who give vaccines as a means of protecting the vaccine supply.
2) Enhance the operation of the nation’s immunization programs.
3) Provide fair, expedited compensation to those who suffer vaccine injuries.
The program was designed as a ``no-fault'' alternative to litigation against vaccine manufacturers versus an exclusive remedy to civil court. It was envisioned by Congress to compensate ``quickly, easily and with certainty and generosity those individuals who are injured or die as a consequence of our universal vaccination policy” and to provide an opt-out to civil court if the litigant disagreed with the ruling. When there was doubt, the program was intended to err on the side of the injured.
Please join SafeMinds to hear from families who have filed petitions within the program and attorneys who represent petitioners in the VICP.
When: Friday, May 18, 2012 at 10 am
Where: The Rayburn Gold Room
(2168 Rayburn House Office Building)
For More Information, please contact Beth Clay at 202-498-4461
Mayer-Johnson to Offer $10,000 Donation Match for Autism Awareness Month
Boston, MA – The National Autism Association (NAA) announced today the launch of a $10,000 match donation program supported by Mayer-Johnson, the maker of products to support participation, communication and learning for students with autism.
“We are delighted to have such a generous corporate sponsor during autism awareness month,” says NAA President Wendy Fournier. “This effort not only shows their commitment to the autism community, but indicates their desire to get others involved by supporting our organization as well.”
This matching opportunity will allow NAA to raise a total of $20,000 in the month of April. For each donation made through the dedicated portal, Mayer-Johnson will match it dollar for dollar. Donors may visit the official NAA web site at www.nationalautism.org for information on how to make their donation beginning April 1.
Managing Editor's Note: From SafeMinds: Awareness Isn't Enough - We Need Action
Our friends at National Autism Association and Designs by Ja9 have given us three of these beautiful necklaces for our readers. Leave a comment to enter. We'll draw the winner on Saturday. Good luck!
In the meantime, purchase your necklaces now for Valentine's Day, Mother's Day and Teacher gifts at Designs By Ja9.
National Autism Association & AutismCollege.com To Offer Free Online Safety Conference
San Diego, CA – The National Autism Association and AutismCollege.com are teaming up in February to offer a free web conference for caregivers of those diagnosed with an Autism Spectrum Disorder (ASD). The web conference series entitled Autism Safety and Crisis Prevention will feature top autism experts covering sensitive safety topics that include sexual-abuse risk reduction, bullying prevention, suicide ideation, wandering prevention, and prevention of risks associated with restraint and seclusion.
Historically, medical literature has maintained that ASD does not affect life expectancy; however, a 2001 California study found elevated death rates in ASD related to several causes that included accidents such as suffocation and drowning. “Safety is a primary concern for those on the spectrum and their parents, yet there is very little practical information out there,” says Chantal Sicile-Kira, author and founder of Autism College. “Autism College is happy to partner with the National Autism Association to help empower parents with information they need to protect their children and teens.”
The Autism Safety and Crisis Prevention webinar will be available to caregivers through February. To register, visit www.autismcollege.com.
Webinar presenters will offer real-life strategies to address multiple safety topics, followed by a question-and-answer session. “Even those families who currently do not face safety challenges can learn valuable information through this free safety online conference,” says NAA President Wendy Fournier. “Being aware of the issues and armed with information is critical for all parents.”
Autism Safety and Crisis Prevention Webinar Schedule:
- Saturday, February 11, 8:15am- 9:45am PST, Dr. Nora Baladerian, Ph.D. will present “How Can Parents Reduce the Risk of Sexual Abuse of Their Child or Young Adult?”
- Saturday, February 11, 10:00am-11:30am PST, Dr. Lori Ernsperger will discuss “The 3 R's to Bullying Prevention for Students with Autism Spectrum Disorders: Recognize, Respond, and Report.”
- Wednesday, February 15, 6:00pm-7:30pm PST, Dr. Joshua Feder will discuss “The Problem of Depression and Suicidal Ideation in Autism and Related Disorders.”
- Saturday, February 18, 8:15am-9:45am PST, Wendy Fournier of the NAA will discuss Wandering Prevention and Response.
- Saturday, February 18, 10:00am- 11:30am PST, Pat Amos, M.A. will discuss “Preventing and Eliminating the Use of Restraints and Seclusion.”
AutismCollege.com provides practical information and training on autism.
About National Autism Association (NAA):
NAA is a parent-run nonprofit organization and the leading voice on issues related to autism safety and crisis prevention. The organization’s mission is to respond to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential. For more information, visit nationalautismassociation.org.
Autism organizations concerned that autism diagnostic changes will jeopardize services, impair tracking, and disrupt research around the globe.
WASHINGTON, DC – Proposed changes to the diagnostic criteria for autism spectrum disorders in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders – 5 (DSM-5) will potentially disrupt appropriate and necessary services to hundreds of thousands of individuals in the US, hamper the ability to track the numbers of people with autism, and interfere with efforts to establish biological causes of autism.
“The proposed criteria make it significantly more difficult to qualify for an autism spectrum diagnosis and they completely eliminate the categories of PDD-NOS and Asperger’s Disorder,” stated Wendy Fournier, National Autism Association President. “In a well-intentioned desire to improve the specificity of an ASD diagnosis, the new criteria may, in fact, go too far and create unintended consequences. It is critically important that any diagnosis address all the symptoms of an individual and allow them the supports they need.”
The new criteria, rationale and previous criteria are available at: http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94
Currently, the federal government is spending millions of dollars to track prevalence of ASDs in 11 states; the 2000 birth cohort is due out this year. The Individuals with Disabilities Education Act (IDEA) requires schools to report the number of students with autism annually. Both sets of data have shown dramatic increases in autism spectrum disorders. One in 110 children in the US is now affected by autism compared to one in 10,000 in the early 1980’s. By significantly changing the criteria for diagnosis, the new DSM-5 will impair the ability of public health officials to compare future rates of autism spectrum disorders to past rates, since the definition will have changed. Accurate projections of trends in autism rates are critical to planning educational interventions, Medicaid and adult services. "By analogy, if the medical community chose to only count melanoma in the future instead of all types of skin cancer, it would look like skin cancer rates had gone down, even though other types were still present and needed treatment,” said Ginger Taylor, Canary Party Executive Director.
As the mother of two young adults with autism and a physician who treats individuals with autism and related disorders, I am alarmed that pregnant women and children continue to be unnecessarily exposed to mercury in the form of the preservative Thimerosal. This exposure is most significant and, in my opinion, most dangerous, when given to pregnant women and young infants.
I have recently begun to see children in my practice whose mothers received both seasonal and H1N1 influenza vaccines during pregnancy. This would typically have exposed both them and their unborn children to 50 mcg of mercury, which far exceeds the threshold that the EPA considers to be safe when consumed in food or water. Obviously, mercury ingested in food and beverages is not 100% absorbed, while injected mercury is. The safety threshold for injected mercury is unknown, but would undoubtedly be far lower than the amount considered to be safely consumed in food. The children with this in utero exposure that I have evaluated to date have suffered from significant, early onset signs of autism. While I cannot prove a direct correlation between their exposure to mercury and their current symptoms, mercury is a known neurotoxin. It is imperative that physicians and expectant mothers learn that this mercury exposure is avoidable.
SafeMinds and I have developed a campaign to educate obstetricians and their patients about common sources of mercury exposure. It focuses on the Thimerosal content of flu shots, but also includes information on dental amalgams, fish, and fluorescent light bulbs. Many doctors are not aware that the flu vaccines they recommend contain mercury and that mercury-free vaccines are readily available. Literature regarding their limited efficacy and safety data will also be provided.
We need your help to insure that this information gets to as many physicians as possible. We are asking you to send us the name and address of your obstetrician.
SafeMinds will then send a comprehensive educational package to your doctor with a brief note that their patient (you) requested that they consider this information. By making this campaign personal, we hope that physicians will take the time to read the materials, pass the information along to their patients, and order only mercury-free vaccines if they chose to continue to recommend influenza vaccination. A small investment of your time may protect hundreds of women and children from unnecessary mercury exposure and the health problems it can cause. Thank you for joining us in this important project.
Cindy Schneider, M.D.
Medical Advisor, SafeMinds
Help Spread the Word Send Us the Name, City and State of your OB/GYN and we will send a package to them from you.
Click here to send information.
The mission statement: To maintain a framework supporting communication, education, research & advocacy for persons with autism and hearing and/or visual impairments.
Currently, approximately one-third of the children in school programs who are deaf or blind also have a diagnosis of autism. Unfortunately, the major primary disabilities categories do not include the terms deaf-autistic or deaf-blind to address their exceptional needs.
To learn more about the Network visit www.autism.com and click on the 'Hearing/Visually Impaired' link on the homepage.
Frequently Asked Questions:
What is the Network?
A compliation of parents, affected individuals and professionals with special interest in people with autism and deafness, or autism and blindness.
How can I benefit from the Network?
We can direct you to support and services available in your local area or community.
How do I join?
We are a group supported by ASA (Autism Society of america 1-800-3AUTISM); we urge you to join ASA —you may join our network by filling out the email form or printing it out and mailing it to ARI (Autism Research Institute).
How ab0ut a trip to New Jersey this spring for your holiday gift? Don't giggle, - we're talking about the ARI Spring conference - loaded with information to help you help your loved one with autism. The conference is at the Newark airport (Liberty) making it easily accessible to most of the country. Newark is a hub for United/Continental and Amtrak trains have a stop on site. From our friends at ARI:
We are very pleased to announce that registration for the Spring 2012 ARI Conference - set for Newark, NJ April 26-29th - is open and will offer a variety of financial support options for families, including: Buddy Rates, free attendance for volunteers on days they help, and Angel Fund discounts for families in financial need. Angel funds and volunteer options are limited and offered on a first-come/first-served basis.
Register Online today and join us to:
Earn CME credits attending our Clinician Seminars, Science Sessions, and Nutrition Seminar (licensed medical providers)
Complete speaker schedules will be online later this month - check the ARI Conference website for updates.
Please visit the Safeminds OB/Gyn mercury awareness campaign. You can download materials to share with your own doctor or on your social media.
TACA Founder Lisa Ackerman is flanked by former NFL plaers Jason Bell, left, and DeShaun Foster.
Congrats to our sponsor and good friends at TACA on a successful event. TACA gives parents the knowledge and skills they need to help their children from diagnosis day forward. Have you seen the thick binder available at every local chapter across the country? TACA - all go, not just for show and looks like they raised a nice chunk of dough! In some orgs, that $250,000 is one salary, at TACA, it will care for a whole lot of families. KS
From The Newport Beach Independent: The 5th Annual Ante Up for Autism “Gala and Casino Night” this month attracted more than 300 people and raised some $250,000 for Newport Beach-based Talk About Curing Autism (TACA) – a national non-profit organization with a mission to educate, empower and provide support to families affected by autism, and to speed up the cycle time from suspicion to autism diagnosis to effective treatments.
“The proceeds from this event will help TACA families who are struggling to battle the confusion of autism,” said Pat McIlvain, the event co-chair and VP of Oakley Sports Marketing. “Thanks to the efforts of TACA, many families are given hope and guidance to put the puzzle pieces in place and unlock the potential of their children.”
“When my son Dylan was diagnosed with autism nearly 10 years ago, my wife and I had no idea what autism was or how it would affect our family,” McIlvain recalled. “We were lost until we found TACA.”
Held at the St. Regis Monarch Beach Resort & Spa, the event included a VIP red carpet entrance, cocktails and hors d’ oeuvres on the resort lawn, a live performance by “One Tree Hill” actress and singer Kate Voegele, tournament poker with tips from poker stars Michelle Lau, David Mosikian and Joe Sebok, a dinner buffet, and a live silent auction. The winner of this year’s poker tournament was Chuck Smith of Seal Beach.
Celebrity attendees included actress Amber Lancaster of MTV’s “The Hard Times of RJ Berger” & CBS’s “CSI: Miami,” Alexis Bellino of “The Real Housewives of OC,” actor, writer & producer Johnathon Schaech, actor Clifton Collins Jr., actor Ken Davitian, actor John Hensley, actress/TV host Nicky Whelan , “Deal or No Deal” model Leyla Milani of Newport Beach, musician, Kelley James and television host and spokesmodel Renée Herlocker handling red-carpet MC duties.
Professional athlete attendees included X Games gold medal snowboarder Gretchen Bleiler, pro beach volleyballers Kerry Walsh and Casey Jennings, former NFL players Jason Bell and DeShaun Foster, and Olympic gold medal hurdler Felix Sanchez.
For more information on TACA, visit tacanow.org.
Our good friends from Lee Silsby Compounding Pharmacy and OurKidsASD are offering you a chance to try two popular and useful products this holiday season.
We'll have two winners each of whom will receive a bottle of Enhansa curcumin supplement and a jar of ASD vitamin and mineral powder (your choice, SCD, without B or without stevia.)
We're grateful for our friends at Lee Silsby. Happy Holiday and good luck! Leave a comment to enter.
The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.
From KTNV Las Vegas. If you're at the conference, Tweet us @ageofautism or leave comments here throughout the weekend. Attend an ARI Conference and you'll go home with more than a goodie bag full of puzzle shaped magnets, you'll have a new bag of tricks to help your loved with with autism through medical science. What happens in Vegas will not stay in Vegas. ;)
Las Vegas, NV (KTNV)- Leaders in Autism research are introducing the newest information on a disease that now effects one in every 110 children. The Autism Research Institute is holding a conference right here in Las Vegas.
We know so much, but so little at the same time.
Autism is an enigmatic disease, now effecting 6,000 school aged children in the State of Nevada.
The opinions and controversies about the cause have perplexed researchers and families effected by Autism for years.
Some of them are shedding light on the latest findings here in Las Vegas this week.
"Emerging research points to genes and the environment being the issue," said Conference Director Denise Fulton.
Tips for a Successful Wish Wash
Plan your date enough in advance to secure an approved location. Try to choose a location with lots of incidental traffic. Some large grocery or department store chains may allow you to wash cars in their parking lot and use their water supply. Other possible locations are churches (right after a service ends), schools or recreation centers.
Gather volunteers – you could contact local high school or college students through a variety of school service organizations including National Honor Society, band, choir, or other clubs. Boy or Girl Scout troops, church and civic groups, and military groups will likely be happy to help for this good cause!
Make sure your location is safe and establish safety rules with all volunteers before you get started. Your volunteers will need water, and possibly an awning to cool off under between washings. If you expect a lot of business, you will need to plan for extra volunteers.
Ask to borrow supplies or have them donated. You’ll need hoses, nozzles, buckets, car washing soap, rags and towels. You will need lots of old towels, so ask for folks to loan or bring theirs.
Promote your carwash in advance using social networking sites such as Facebook and Twitter. You may be able to promote your event in church or school newsletters or through service organizations that are helping with the Wish Wash.
Make colorful signs to use the day of the car wash and be sure to let folks know proceeds will benefit families affected by autism. A simple “Wish Wash for Autism” will do – but be creative!
Consider having a lemonade stand and a donation jar set up near the carwash to maximize your fundraising efforts.
You might want to plan an alternate “rain date” in case the weather doesn’t cooperate.
If you have other questions or concerns, contact email@example.com
SmartVax encourages the pursuit of novel new hypotheses that could help explain the mechanisms of vaccine-injury. One such hypothesis is that HLA-DR4 might be a potential genetic marker for adverse-event risk in response to vaccination.
Knowledge of the human immune system has increased dramatically over the past decades with a greater understanding of the complex nature of the regulation of the immune response emerging year-by-year. Only within the last 25 years have we learned of the different immune responses generated by Helper Th1 and Th2 cells and their different roles in attacking different types of pathogens. Th17 cells (and their role in autoimmune disease) were not mentioned in the scientific literature until just a mere five years ago in 2006 and have yet to be fully understood. Another area of growing research is the study of HLA subtypes and their potential as genetic markers for a variety of autoimmune diseases. HLA stands for Human Leukocyte Antigen system and is the Major Histocompatibility Complex (MHC) in humans. The HLA genes encode cell-surface antigen presenting proteins and can be divided into several classes. Class I molecules present proteins from inside the cells potentially including viral proteins, whereas Class II molecules present proteins from outside the cell to T-lymphocytes ultimately resulting in an antibody response if not suppressed by suppressor T-cells.
Increasingly, autoimmune diseases have been recognized as having a genetic basis mediated by HLA subtypes. Certain HLA genes create a genetic disposition towards development of autoimmune disease, typically requiring some environmental trigger to evolve into a full-blown disease state. For instance, celiac disease has been strongly associated with HLA-DQ2, while Type I diabetes, rheumatoid arthritis, and multiple sclerosis have been associated with HLA-DR4, among many examples. Likewise, numerous published studies have demonstrated an association between HLA-DR4 and autism (1,2,3). Given the genetic transmission of HLA subtypes one would expect to find a relationship between parental autoimmune disease and autism. Recent studies have shown that this indeed the case. A recent article appearing in Pediatrics showed associations regarding a family history of infantile autism and a maternal history of rheumatoid arthritis (4). Further examples are highlighted in the article New Clues to who is Susceptible to Autism via Vaccine Injury, which suggests that children with a family history of thyroid disease or rheumatoid arthritis have a 1 in 7 and 1 in 8 chance of developing autism (5).
Tae Bo® Creator, Billy Blanks® Will Lead Attempt to Break World Kickboxing Record
Tampa Event will be held on October 1st and benefit the National Autism Association
Tampa, FL – The National Autism Association (NAA) and fitness expert Billy Blanks® are putting out a call for people to gather in Tampa on October 1st, 2011 to be part of a history-making moment. In a family-friendly event dubbed Autism Kick, participants will attempt to break the Guinness World Record(TM) for the largest kickboxing class ever assembled. The current world record was set in Budapest, Hungary in 2009 where 2,336 participants kick-boxed for 11 minutes.
The event will be held on Saturday, October 1st at George M. Steinbrenner Field in Tampa, home of the Tampa Yankees and New York Yankees Spring Training. Along with being a part of history, participants will receive a commemorative Autism Kick T-shirt and sports water bottle. Opportunities to have an official event photo taken with Billy Blanks® or to join him at the exclusive Steinbrenner Field DugOut Club Meet & Greet lunch and autograph signing are available for sign up to a limited number of people. Those who cannot attend the Tampa event have the opportunity to participate online while raising autism awareness, funding and winning prizes.
“When I faced struggles growing up, I was lucky enough to get support. It is a privilege for me to return that favor and help bring awareness to autism and the thousands of families affected,” stated Billy Blanks.“There is no better way than to break a Guinness World Record(TM). I know we can beat this together!”
NAA’s hotel partner and event sponsor, TradeWinds Island Resorts on St. Pete Beach is offering a special rate of $99 per night to attendees who would like to stay on the beach and make a weekend of this special event.
Autism is a national health crisis that now affects 1 in 110 children in the U.S. Proceeds from Autism Kick will benefit NAA’s vital programs serving families affected by Autism. “I’ve loved looking through Guinness World Records(TM) books since I was a kid,” said NAA President, Wendy Fournier. “It’s wonderful that even folks like me, with no kickboxing experience, can be part of this exciting attempt to make history and help families affected by Autism at the same time.”
For full details, or to register for Autism Kick, please visit http://www.autismkick.com. For media inquiries and event sponsorship opportunities, email Event Coordinator, Aimee Allenback at firstname.lastname@example.org.
About Billy Blanks
Billy Blanks® is the creator of Tae Bo® fitness, the groundbreaking workout system widely credited as the foundation of all kick-boxing programs and arguably the top-selling workout program of all time. Blanks recently developed the ultimate Tae Bo® workout, PT24/7, the first workout to incorporate both cardio and strength training, using specially designed resistance bands.
Blanks is an eighth-degree black belt in Tae Kwon Do and holds black belts in five other forms of martial arts. He was a five-time Amateur Athletic Union Champion, seven-time World Karate champion, the 1982 Massachusetts Golden Gloves champion in the light-heavyweight class, Tri-State Golden Gloves Champion of Champions, winner of over 30 gold medals in various international competitions and captain of the 1980 U.S. Olympic Karate team. In 1982, Blanks was inducted into the Karate Hall of Fame.
The mission of the National Autism Association is to respond to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential. Since 2003, NAA has created and implemented direct-assistance programs for the growing number of families affected by autism. Along with these services, NAA provides autism research funding, ongoing advocacy, support and education. A parent-led non-profit organization, our objectives and resources focus upon strengthening families affected by autism through support in obtaining therapy and medical services, and funding impactful research aimed at real progress for our children and all individuals affected by autism. www.nationalautism.org
By Heather Fraser, author of The Peanut Allergic Epidemic (2011)
The SmartVax web site does two important and new things: it offers concerned parents a place where they can obtain balanced information on vaccine risks and benefits; and it highlights parental concerns about vaccine safety to the wider public. This adds to what we already know from polls and anecdotal evidence: vaccine safety is a number one concern for parents.
I have now given more than half a dozen interviews about The Peanut Allergy Epidemic. After outlining historical evidence of vaccine damage and current vaccine risks to children, I am asked to advise parents on what they should do! Invariably, I point to the SmartVax web site as a place for constructive and balanced information. Significantly, this information is non-adversarial, straightforward and compelling. It includes: basic links to vaccine monographs; an explanation for the rise of pertussis in California; and even points to the fact that in many instances we lack data on risks and more research needs to be done. This is enough to give vaccine consumers mental room to ask those important questions such as are we over- vaccinated? Do we know enough about the adverse events that can emerge from the increasing variety of shots? How do these vaccines work on the gut and lead to neurological damage and allergies?
Safeminds.org Washington DC. The Institute of Medicine's Panel on Adverse Effects of Vaccines issued a report today on the evidence and causality of vaccine harms. Despite a glowing press release, the report does little to allay public concerns over adverse effects of vaccines and suggests that we urgently need more science on vaccine adverse effects.
The IOM report took two years to produce, mostly behind closed doors, and was paid for by the Department of Health and Human Services, the government agency which is also a defendant against the vaccine-injured in the government's vaccine court.
Due to a narrow set of objectives defined for the IOM by the government, the report only looked at a small set of published research studies linking just two vaccines to developmental disorders such as autism. Only four epidemiological studies were considered of sufficient quality to evaluate the MMR vaccine in relation to autism and no studies were deemed of sufficient quality for the DtaP vaccine and autism analysis. The committee did not attempt to evaluate six other vaccines for autism causation, the safety of the cumulative vaccine schedule and health outcomes like autism, or the safety of vaccine ingredients like mercury and aluminum in the context of chemical exposures from other sources like air pollution or consumer products.
The report considered 158 potential adverse outcomes from vaccines. Of these, 135 or 85% were found to have inadequate research to accept or reject a causal association. Of the 23 outcomes where the research was deemed adequate, 18 or 78% were found supportive of harm. Vaccines were cleared of safety concerns for just five of the outcomes considered. "These statistics are hardly reassuring to parents who are now asked to give their young children over 32 vaccinations," noted Sallie Bernard, President of SafeMinds.
The report found likely causality of immune dysfunction, seizures and encephalopathy from some vaccines. These conditions are often found in individuals with autism. "It is plausible that a subset of children became autistic because of these adverse events from their vaccines. There are many cases of autism compensated by the vaccine court after having one of these conditions," noted Lyn Redwood, RN, Director of SafeMinds. Details of a recent review are available HERE: A SafeMinds review (HERE) of the epidemiological studies on MMR and thimerosal and autism is available:
That 85% of even a small subset of health outcomes has inadequate science speaks of the critical need for more research on vaccine safety. SafeMinds calls on Congress and the Administration to institute a rigorous science program on vaccine safety. This program would include the establishment of an independent Vaccine Safety Agency (similar to the National Transportation Safety Board), the launch of a study comparing health outcomes between vaccinated and unvaccinated children, the inclusion of vaccines as an exposure variable in the National Children's Study and mandatory reporting by physicians to the Vaccine Adverse Event Reporting System.
The Coalition for SafeMinds is a 501C-3 organization dedicated to restoring health and protecting future generations by eradicating the devastation of neurological disorders induced by mercury and man-made toxicants.
SafeMinds has launched a new website, SmartVax, to change the discourse on vaccines in a manner that will create a positive environment where consumers are empowered and scientists are encouraged to pursue the necessary research on vaccine-injury and vaccine-effectiveness. The SmartVax philosophy places an emphasis on rigorous scientific research to understand mechanisms of vaccine-injury and vaccine effectiveness. On the contrary, the “Max-Vax” philosophy prevalent amongst public health officials is discouraging such scientific research, and providing incomplete information about risks vs benefits to parents, because of a belief system that maximizing vaccine utilization is the best way to improve children’s health.
A prime example is the general refrain from Max-Vax adherents that “it’s been studied, and vaccines don’t cause autism.” In fact, only one of the seven vaccines administered in the first year of an American child’s life has been studied for autism in children who received versus didn’t receive the vaccine – and that vaccine, the HepB, was found to be associated with a 3x increased risk of autism in a recent study.
The increased number of vaccines administered to American children at an early age in the late 1980’s is chronologically associated with the start of the autism epidemic, as shown in this graph:
As described on the SmartVax website, the vaccine-autism question is far from answered. MMR and thimerosal studies do not stand up to close scrutiny. Possible vaccine-injury from aluminum adjuvant in vaccines has not been studied in humans, despite animal research indicating that vaccines containing aluminum adjuvant can cause motor neuron death. There are other plausible hypotheses regarding vaccine-injury mechanisms that have not been studied. SmartVax supports performing comprehensive and unbiased scientific research on all vaccines and vaccine components.
Follow SmartVax on Facebook and let us know your thoughts and suggestions in the online conversation there. If you find the information useful, please share the website information with prospective parents, family, and friends.
CONTEST IS CLOSED: Congratst to Jenny, TripletMom, Julie and Valerie! I've sent you each an email. Kim
Dog days of summer got you down? How about a very cool contest? Our sponsor Lee Silsby is giving away two bottles of 150 mg 150 capsule ENHANSA Enhanced Absorption Curcumin Supplement plus two containers of ASD Vitamin Mineral SCD Legal Powder 30 scoops per container.
Pharmacist Alan Israel is one of the world's leading experts in custom compounding products for the autism community. They support our community at conferences, by advertising with us, and with their service and follow through, including constant work to get insurance coverage for families.
Please visit their site at Lee Silsby or stop into their location in Cleveland Heights, Ohio at the corner of Lee and Silsby.
CONTEST IS NOW CLOSED.
“We have 16 studies already that clearly state that vaccines do not cause autism.”
-- Amy Pisani, Executive Director, Every Child By Two
“16 studies have shown no causal association between vaccines and autism, and these studies carry weight in the scientific industry.”
-- Dr. Nancy Snyderman, NBC Today Show Medical Editor
“The science is largely complete. Ten epidemiological studies have shown MMR vaccine doesn’t cause autism; six have shown thimerosal doesn’t cause autism.”
-- Dr. Paul Offit, “Autism’s False Prophets”
A NOTE FROM SAFEMINDS:
There are 16 epidemiological studies here on MMR vaccines, thimerosal and autism. These studies represent the most often cited papers by scientists, public health officials and members of the media when trying to refute any evidence of an association between vaccinations and autism.
There are serious methodological limitations, design flaws, conflicts of interest or other problems related to each of these 16 studies. These flaws have been pointed out by government officials, other researchers, medical review panels and even the authors of the studies themselves. Taken together, the limitations of these studies make it impossible to conclude that thimerosal and MMR vaccines are not associated with autism.
SafeMinds would like to acknowledge the previous work in this regard gathered by the “Fourteen Studies” project at Generation Rescue: http://www.14studies.org/about.html
One additional study on autism and thimerosal was published in September 2010 while this paper was in completed draft form. This study’s methods produced a result that demonstrated that thimerosal exposure was protective against autism. Further analysis of this study is forthcoming but not included here.
FLAWS AND LIMITATIONS OF THIMEROSAL-AUTISM EPIDEMIOLOGY STUDIES
There has only been one major scientific review of the main epidemiological studies to examine a potential association between thimerosal containing vaccines (TCVs) and autism spectrum disorders: The Institute of Medicine Immunization Safety Committee Report, issued in May, 2004.
The IOM report focused almost exclusively on large, population-based epidemiological studies based on health records. The committee chose to minimize the importance of several biomedical thimerosal studies conducted in laboratories and animal models. Today, a much larger body of medical literature has been amassed which clearly demonstrates the powerful neurotoxic effects of thimerosal. These are joined by other studies demonstrating the increased risks of simultaneous administration of certain vaccines on the current childhood schedule.
WHAT THE IOM CONSIDERED:
The IOM committee reviewed epidemiological studies examining TCVs and autism, including three controlled observational studies (Hviid et al., 2003; Miller, 2004; Verstraeten et al., 2003) and two uncontrolled observational studies (Madsen et al., 2003; Stehr-Green et al., 2003). The published papers “consistently provided evidence of no association between TCVs and autism, despite the fact that these studies utilized different methods and examined different populations (in Sweden, Denmark, the United States, and the United Kingdom),” the committee wrote.
IOM MAIN CONCLUSIONS:
■ “Based on this body of evidence, the committee concludes that the evidence favors rejection of a causal relationship between thimerosal-containing vaccines and autism.”
■ “In the absence of experimental or human evidence that vaccination (either the MMR vaccine or the preservative thimerosal) affects metabolic, developmental, immune, or other physiological or molecular mechanisms that are causally related to the development of autism, the committee concludes that the hypotheses generated to date are theoretical only.”
LIMITATIONS OF THE IOM REVIEW:
■ Because the “vast majority” of ASD cases cannot be accurately sub-classified, “if there is a subset of individuals with autism syndrome triggered by exposure to vaccines, our ability to find it is very limited in the absence of a biological marker.”
■ In fact, the committee admitted, trying to find a cause of autism using population-based epidemiological analyses “requires either a well-defined at-risk population or a large effect in the general population.”
■ But without any known biomarkers, well-defined risk factors, or large effect sizes, “the committee cannot rule out, based on the epidemiological evidence, the possibility that vaccines contribute to autism in some small subset or very unusual circumstances.”
NOTE: Knowledge of biomarkers and risk factors in ASD has increased considerably since the release of the 2004 IOM report.
CRITIQUES OF THE IOM REVIEW
Mark D. Noble, PhD - Professor of Genetics and of Neurobiology and Anatomy, University of Rochester Medical Center 
It is easy to understand why people are not believing the scientific community. It reduces confidence in the scientific enterprise when it turns out that the CDC had information on early versions of the studies of Verstraeten et al. that demonstrated a linkage between thimerosal exposure and autism, that these studies were never published, and that no one has ever explained satisfactorily why different analyses were conducted and why they were changed. But all of these studies have equally debilitating flaws that invalidate any conclusions drawn from them on thimerosal safety. And if it turns out that that there is a subset of children for whom additives in vaccines are a problem, then this is important to know. For then we can focus on how to identify these children in advance. The conclusions I have drawn are that we are not going to solve this problem by ignoring it. So let’s embrace it. Let’s get the data.
Irva Hertz-Picciotto, PhD, MPH, Chief of the Division of Environmental and Occupational Health, University of California, Davis School of Medicine –
Several large studies finding no association are far from robust, as they suffer from numerous biases that seriously limit their definitiveness. These include: noncomparable sources for ascertainment of cases, uncontrolled confounding, unrepresentative sample due to selective exclusions, and an as-yet unexplained pattern whereby children with earliest vaccines are the least likely to have developmental deficits. Thus, the body of evidence at this point is inadequate to draw conclusions… Several investigations have been ecologic studies, widely known to be the weakest possible epidemiologic design. Even restricting discussion to the individual-level designs, published studies conducted in Denmark, the UK, and the US are characterized by serious, even fatal, flaws. To regain the confidence that we in the medical/public health/scientific community need in order to fulfill our mandate to protect health, we cannot avoid facing these tough scientific questions head-on. This means funding solid scientific research into vaccines, thimerosal, and the related issues of susceptibility at the population level.
Richard Deth, PhD, Professor of Pharmacology, Northeastern University – 
SafeMinds has launched a new website, SmartVax, to change the discourse on vaccines in a manner that will create a positive environment where consumers are empowered and scientists are encouraged to pursue the necessary research on vaccine-injury and vaccine-effectiveness. The website raises an important question: To what extent has an increase in vaccine-injuries changed the risks versus benefits of the USA vaccination program for young children? The SmartVax website provides a Weigh The Risks analysis of the current vaccine risks versus benefits for American children which indicates that vaccine-injury risk (1 in 13 children) is currently higher than the injury risk of each disease. The vaccine-injury risk was quantifiable for vaccine-induced asthma. Since there were insufficient studies available to calculate other risks, this section provides discussions on the plausibility of vaccine-induced autism, vaccine-induced allergies, vaccine-induced ADHD, and vaccine-induced deaths. The disease risk was calculated as the incremental risk to an individual child if that child is not vaccinated during ages 0 – 4 in two cases: 1) in a highly vaccinated population and 2) in a population with low vaccination rates:
The point of this analysis is not to argue against vaccination programs, since vaccines can provide valuable protection against disease injuries and deaths, but rather to dispel the unproven assumption that all existing vaccines’ benefits exceed risks in the USA today and to issue an urgent call to scientists for research to dramatically reduce vaccine-injuries. The SmartVax philosophy proposes that knowledge gained by understanding the mechanism of vaccine-injuries will lead to a smarter vaccination program that produces the best overall public health results.
Follow SmartVax on Facebook (HERE) and let us know your thoughts and suggestions in the online conversation there. If you find the information useful, please share the website information with prospective parents, family, and friends.