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Implications of Autism Genome Project Consortium Findings
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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.
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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.
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Discover Magazine: Autism It's Not Just In the Head
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By Jill Neimark
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.
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Weldon Maloney Introduce Vaccine Safety Bill
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Measure Removes CDC's Conflict of Interest; Helps Preserve Public Confidence in Vaccine Safety Research
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.
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NAA and SafeMinds Call for Increased Environmental Research on Autism at IOM Workshop
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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.
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2007 Flu Vaccine Brochure Available
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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.
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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.
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SafeMinds Appoints New Board Member
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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
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New York Book Signing
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Tom Bernard's Wall and 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).
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Are You Ready to Do Something to Help the Cause?
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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.
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Join MIA_MercuryIndcedAutism Action List
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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.
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