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Finding the Truth
Stop the Mercury! Start the Cure! April 2007
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Implications of Autism Genome Project Consortium Findings
 
By Mark Blaxill, Vice President, Coalition of SafeMinds

SafeMinds Director Mark Blaxill wrote a critique of a recently published paper on gene findings and autism. The critique notes a decided absence of replicated significant findings despite years of effort and calls for a rapid shift in research funding towards the role of environmental contributions to autism.

LACK OF POSITIVE HERITABILITY FINDINGS IN AUTISM PROVIDES COMPELLING EVIDENCE TO SHIFT PRIORITY TO MORE PROMISING ENVIRONMENTAL FACTORS RESEARCH

The earlier genome scans conducted with smaller samples have met with little success in finding or replicating prior findings of "autism genes". So the leading researchers in the field recently combined forces in an Autism Genome Project Consortium (AGPC). By pooling resources and genetic material from nearly 1500 families with multiple affected children, the AGPC believed they could increase the odds of locating areas of the parental genome that could be linked to their autistic offspring.

The results of the AGPC effort produced a result that is little different than the result one might expect from taking a randomized group of unaffected families. It also failed to replicate any of the most highly touted suggestive findings from earlier genome scans. The negative AGPC findings provide strong evidence that heritability claims in autism are exaggerated if not false. Provided with enormous resource support and under the most favorable study conditions, the AGPC found no evidence of heritability.

The negative results highlight the weakness of the concordance evidence cited to support the heritability hypothesis. Examination of this evidence shows that: identical twins are frequently non-concordant for autism; fraternal twins are concordant for autism more frequently than siblings and at rates closer to identical twins than previously acknowledged; sibling risk may not exceed population risk as much as previously reported; and population risk is rising at a rapid rate. These considerations argue against the foundations of the heritability hypothesis.

The AGPC paper emphasized a new area with little bearing on the heritability hypothesis. Instead of frank acknowledgement of the negative genome scan findings and even a nominal consideration of its implications, the study authors chose instead to highlight isolated findings of this new area: de novo genetic mutations (copy number variants or CNVs) in their study subjects. Although findings of CNV frequency in autism are worth noting, the AGPC results were tentative and inconclusive. It appears that the AGPC authors preferred to change the subject to an entirely different area of genetic research rather than to reflect upon the implications of their negative findings on heritability.

The falsification of the heritability hypothesis in autism is an important finding. It suggests that what many scientists believe about autism causation is wrong. It supports the argument advanced by many autism parents and a rising number of scientists that the role of environmental factors in autism is far more important than previously recognized. And it calls for a shift in financial resources away from the pursuit of heritability research and towards environmental factors research.

Click here to read the remainder of this paper.


Join SafeMinds at the Autism One Conference in Chicago
 
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SafeMinds will be participating at the Autism One conference in Chicago May 23-27 with board member presentations, a booth, and as the beneficiary of a special fundraising event on Saturday, May 26th.

About Autism One May 2007 marks the fifth annual Autism One Conference. Over the years Autism One has grown and changed to meet your needs and the expanding needs of our community.

Listening to and learning from fellow parents exposes not only the urgent need for change, but provides the impetus as well. The past can no longer serve as a proper prologue of the future.

This year will be a watershed time in the continuing devolution of autism. On all fronts, parental inventiveness has replaced the murky dark outlines of autism with precision and purpose, and in doing so helped reveal many of the causes, environmental contexts and treatments for autism.

We are tremendously pleased, therefore, to bring you Autism One 2007: Roadmap to Recovery. Join us and the increasing number of other families whose children continue to improve on their singular and simultaneously similar paths to recovery.

Autism One 2007 introduces two new initiatives. The first is the Arts Festival, the second is Law Day.

Uplifting and inspiring, art brings out the best in us. The Autism One 2007 Arts Festival serves as a bridge not only to seeing the inner beauty of our children but in reaching out to a wider audience to advance understanding of autism.

The Arts Festival features and celebrates the artistic work of families affected by autism providing the opportunity to rejoice in the creativity of the human spirit. The Festival will showcase works across a variety of artistic mediums from painting to the performing arts.

For more information or to register for the conference, please visit www.autismone.org.


Discover Magazine: Autism It's Not Just In the Head
 
By Jill Neimark
discover magazine

The devastating derangements of autism also show up in the gut and in the immune system. That unexpected discovery is sparking new treatments that target the body in addition to the brain.

"There were days I considered shutting the garage door and letting the car run until I was dead," says Colorado mom Erin Griffin, of the time nine years ago when she learned that both her boys-not just her firstborn-suffered from autism. Brendan, her angular, dark-haired older child, was diagnosed in 1996 at age 4. Kyle, her round-faced, hazel-eyed younger son, was diagnosed in 1998 at age 2½.

But Kyle and Brendan's story does not have a tragic ending. After interventions that included occupational and speech therapy, as well as dietary change and nutritional supplements, both boys improved significantly. Their tale of slow, steady recovery reflects the changing landscape of autism today. The condition, traditionally seen as genetic and originating in the brain, is starting to be viewed in a broader and very different light, as a possible immune and neuroinflammatory disorder. As a result, autism is beginning to look like a condition that can, in some and perhaps many cases, be successfully treated.

That is astonishing news about a disorder that usually makes headlines because it seems to be growing rapidly more widespread. In the United States, the diagnosis of autism spectrum disorders has increased about tenfold over the past two decades, and a 2003 report by the Centers for Disease Control suggests that as many as one in every 166 children is now on the autism spectrum, while another one in six suffers from a neurodevelopmental delay. This explosion of cases has raised countless questions: Is the increase real, is it the result of increased awareness and expanding diagnostic categories, is it due to environmental changes, or all of the above? There may be no single answer. But the public concern about autism has caught the ear of federal lawmakers. The Combating Autism Act, approved last December, authorized nearly $1 billion over the next four years for autism-related research and intervention.

Meanwhile, on the sidelines of that confusing discussion, a disparate group-immunologists, naturopaths, neuroscientists, and toxicologists-is turning up clues that are yielding novel strategies to help autistic patients. New studies are examining contributing factors ranging from vaccine reactions to atypical growth in the placenta, abnormal tissue in the gut, inflamed tissue in the brain, food allergies, and disturbed brain wave synchrony. Some clinicians are using genetic test results to recommend unconventional nutritional therapies, and others employ drugs to fight viruses and quell inflammation.

Above all, there is a new emphasis on the interaction between vulnerable genes and environmental triggers, along with a growing sense that low-dose, multiple toxic and infectious exposures may be a major contributing factor to autism and its related disorders. A vivid analogy is that genes load the gun, but environment pulls the trigger. "Like cancer, autism is a very complex disease," says Craig Newschaffer, chairman of Epidemiology and Biostatistics at the Drexel University School of Public Health, "and it's exciting to start asking questions about the interaction between genes and environment. There's really a very rich array of potential exposure variables."

Click here to read the full article.

SafeMinds board member Mark Blaxill provided extensive background information for this article. We would like to thank the author for her incredibly balanced and thorough investigation.


Weldon Maloney Introduce Vaccine Safety Bill
 
Measure Removes CDC's Conflict of Interest; Helps Preserve Public Confidence in Vaccine Safety Research
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WASHINGTON, April 19, 2007 PRNewswire-USNewswire/ -- At a press conference Thursday, U.S. Reps. Dave Weldon, M.D. (R-FL) and Carolyn Maloney (D-NY) introduced a bill that would give responsibility for the nation's vaccine safety to an independent agency within the Department of Health and Human Services, removing most vaccine safety research from the Centers for Disease Control (CDC). Currently, the CDC has responsibility for both vaccine safety and promotion, which is an inherent conflict of interest increasingly garnering public criticism.

"There's an enormous inherent conflict of interest within the CDC, and if we fail to move vaccine safety to a separate independent office, safety issues will remain a low priority and public confidence in vaccines will continue to erode," said Weldon, noting that across the federal government similar conflicts of interests have been remedied, but with regard to mandatory childhood vaccines the conflict continues to persist unchecked. "This bill will provide the independence necessary to ensure that vaccine safety research is robust, unbiased, free from conflict of interest criticism, and broadly accepted by the public at large."

To underscore the bill's importance, Weldon highlighted the fact that a top CDC official urged the journal Pediatrics to publish a Danish study on the link between thimerosal and autism despite the CDC's knowledge that this very same study was previously rejected by the highly acclaimed journals, JAMA and Lancet. The official urged the editor of Pediatrics to give the study, which he characterized as a "powerful epidemiology" study, an "expedited review."

"The public has begun to question whether our government is doing all it can to ensure vaccine safety -- and they are absolutely right to do so," said Congresswoman Maloney. "When we in government require children to be vaccinated, we must make every possible effort to ensure that vaccines are safe. I believe that this legislation will benefit nearly every child in America. I look forward to working with Dr. Weldon and our colleagues in the House to pass this incredibly important bill."

Specifically, the Vaccine Safety and Public Confidence Assurance Act of 2007 would create and equip an independent office to address, investigate, and head off potential vaccine safety problems -- like the use of mercury in vaccines -- in an objective and non-conflicted office whose sole purpose is vaccine safety and evaluation. Additionally, it provides $80 million in funding to conduct vaccine safety research and analysis.

Weldon and Maloney were joined by several groups advocating vaccine safety reform, including the National Autism Association, A-Champs, and SafeMINDS.


NAA and SafeMinds Call for Increased Environmental Research on Autism at IOM Workshop
 
Meeting marks "turning point" in research direction and input from parents

Washington, DC - The National Autism Association (NAA) and SafeMinds (Sensible Action for Ending Mercury Induced Neurological Disorders) urged scientists working on autism to focus on environmental factors including vaccines at an April 18-19 Institute of Medicine (IOM) workshop. The workshop, entitled "Autism and the Environment: Challenges and Opportunities for Research," was planned by a committee representing government agencies, academic institutions, and autism organizations. Planning committee members included NAA board member Laura Bono and Safe Minds vice president Mark Blaxill. Both are parents of children diagnosed with autism.

In discussing the most promising areas of autism research, past performance by the Centers for Disease Control and Prevention (CDC) and the role of vaccines in the development of autism were addressed. Ms. Bono presented "Perspectives of the Advocacy Community," stating, "We believe the CDC has a performance and credibility problem. Their failure to declare an epidemic beginning with the 1989 birth cohort, to study the time trend data, or to examine the toxic and viral body burdens of children are why we are here today - over 15 years too late."

The two-day meeting concluded with a panel discussion on "Public-Private Partnerships" among scientists and advocates. Panelists included NAA board member Lyn Redwood, RN, MSN and Sallie Bernard, executive director of SafeMinds, who urged federal agencies to allocate significantly more to the environmental side of the "gene-environment" equation and to reach out to parents who are the stakeholders in this disease. "We need the guidance of parents in identifying the most promising areas of investigation to find meaningful ways of improving the lives of those with autism now and to prevent its occurrence in the future," stated Ms. Redwood.

Many attendees, including parents, physicians, and researchers, expressed optimism following the workshop that autism research might now be shifting to more fruitful areas examining toxin and pathogen effects. Sue Swedo of NIH and Irva Hertz-Picciotto of the MIND Institute reported that major autism research databases will incorporate exposure histories including immunization records. David Schwartz, director of the National Institute of Environmental Health Sciences (NIEHS), suggested that applications for developing exposure and body burden testing methods for autism be made to the NIEHS's Exposure Biology Program, part of its Gene-Environment Initiative. As part of his power point presentation, Dr. Larry Needham of the CDC's National Center for Environmental Health listed the mercury-based vaccine preservative thimerosal among five other chemicals linked to autism spectrum disorders.

"I see it as a turning point," said Dr. William Raub, science adviser to the U.S. Secretary of Health and Human Services. Dr. Raub said the workshop would give "a higher profile" to the possibility that environmental agents are contributing to the development of autism.


2007 Flu Vaccine Brochure Available
 
Shot

SafeMinds has produced a brochure providing information on the flu vaccine that is available to communicate the risks still posed by this thimerosal- containing vaccine. We encourage you to distribute this brochure in your doctor's office and other places you think people will pick up. Please feel free to download the file here or e-mail eksafeminds@gmail.com to receive copies of the brochure in the mail.


Autism Awareness Month Video from TACA
 
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This video is from our dear friends at Talk About Curing Autism (TACA), a California-based group lead by Executive Director, Lisa Ackerman - Jeff's Mom.

Please forward this message freely and encourage your family and friends to take a look at this moving message of love and hope!

http://www.tacanow.org/video/hope-video.htm

Click here to learn more about TACA.


SafeMinds Appoints New Board Member
 

SafeMinds is pleased to announce the appointment of Katie Wright-Hildebrand to the board of directors.

Katie is the mother of two boys, Mathias, age 3 and 5 year-old Christian. Christian regressed into autism at 2.5 years old. Katie completed her under-graduate studies at Boston University and received a Masters degree in Education at Columbia University. She studied counseling psychology and received her professional license in 2000. She worked as the Clinical Director of the Sexual Assault Crisis Center in Stamford, CT providing free and confidential counseling services to male and female survivors of rape and sexual assaults. Katie resigned her position when Christian became ill and now, with her husband Andreas, is dedicated to working to improve the lives of children and families affected by autism.

Photo by Fran Collin


New York Book Signing
 
Tom Bernard's Wall and Mean
wall&mean

New York City area residents: W.W. Norton & Company and Barnes & Noble cordially invite you to celebrate the launch of Tom Bernard's debut novel, WALL AND MEAN. Author Reading & Signing on Wednesday, May 9, 2007 at 6:00-7:00 pm, Citigroup Center Barnes & Noble, 160 East 54th Street (at 3rd Avenue). All of the author's earnings from this book will be donated to SafeMinds (www.safeminds.org) and Autism Speaks (www.autismspeaks.org).


Are You Ready to Do Something to Help the Cause?
 
Volunteer for SafeMinds

SafeMinds is currently looking for volunteers to help out with a variety of tasks. Are you interested in serving on an event committee? We are looking for people in Atlanta, Southern California and the Boston area to help plan and support 2007 fundraising events in these areas. We are also looking for people who would like to help staff booths at local and national autism conferences. Do you have another talent you think we can use?

Please contact us if you are interested in helping.


Wishing Won't Cure Autism . . .
 
But Research Will
wistful

Support SafeMinds today. Every donation makes an impact. Click here to make a donation.


Join MIA_MercuryIndcedAutism Action List
 
mia logo

Please join a new Yahoo group called MIA-Mercury Induced Autism. The goal in the formation of this list was to create a resource where parents, grandparents, and anyone whose life has been impacted by mercury induced autism could go to seek information or find support.

To join the discussion please click here.



The Coalition for SafeMinds (Sensible Action For Ending Mercury-Induced Neurological Disorders) is a private nonprofit organization founded to investigate and raise awareness of the risks to infants and children of exposure to mercury from medical products, including thimerosal in vaccines. SafeMinds supports research on the potential harmful effects of mercury and thimerosal. Our mission is to end the health and personal devastations caused by the needless use of mercury in medicines.

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