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Research, Advocacy and Awareness to Reduce Health Devastation Caused by Needless Exposure to Mercury
June 2010 Issue 2
Global Legally Binding Treaty on Mercurty
SafeMinds Responds to Pediatrics Article on Vaccines
Evaluation of Effectiveness of GFCF Diet in Autism Study
Potential Game Changer for those Injured by Vaccines
National Vaccine Advisory Committee Meeting
Advisory Committee on Childhood Vaccines
NIEHS Public Interest Partners Meeting
SafeMinds Board Members Spread Awareness
SafeMinds Comes in 2nd Out of 145 Charities!
Online Auction Starts July 20
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Global Legally Binding Treaty on Mercury Expected by 2013

globalSafeMinds has an extraordinary opportunity to fight for an end to mercury in vaccines on the world stage. Over 130 world governments just participated in the first session of the United Nations Intergovernmental Negotiating Committee (INC1) to prepare a Global Legally Binding Instrument on Mercury from June 7-11, 2010 in Stockholm. SafeMinds sent a formal statement asking that all forms of mercury from all human activities and consumer products be considered when assessing environmental and human exposure, including vaccines.

A total of five sessions to negotiate controls on mercury are scheduled over the next three years, and we hope to attend the next session as the strong voice for alternatives to mercury in vaccines. Mercury exposure can affect fetal neurological development and has been linked to lowered fertility, brain and nerve damage and heart disease in adults who have high levels of mercury in their blood. Given the severity of global mercury poisoning, its permanent impact, and its climbing prevalence, we believe it's negligent to continue to expose pregnant and nursing mothers and infant children to any amount of avoidable mercury.
 
Read more here.
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SafeMinds Research Commentary

On-Time Vaccine Receipt in the First Yeapediatricsr Does Not Adversely Affect Neuropsychological Outcomes
SafeMin
ds Tells You What's Wrong with this Study

SafeMinds Key Issues with Smith Study:
  • Study included a 30% participation rate, when standard for scientific research is at least 70%.
  • Children were tested at 7-10 years of age with no attempt to control for prior interventions which may have ameliorated neuropsychological deficits.
  • Prenatal and postnatal thimerosal exposures were not combined in assessing outcomes.
  • Children born weighting 5 lbs 8 ounces or less (9% of the population) were excluded from the study
  • Did not include full vaccines schedule exposure.
  • A vaccine was considered given "on time" if within 30 days of recommended window.
Click here to read full article on study deficits

SafeMinds President Sallie Bernard submitted comments regarding the study to Pediatrics. These were accepted by the journal and posted online.Comments to Pediatrics posted by others, including Dr. Larry Rosen, pointed out conflicts of interest by the study authors as well as other deficiencies in the research.

SafeMinds Looks closely at Hyman study on Effectiveness of a Gluten Free Casein Free Diet in Autism
Children with Markers for Celiac Disease Eliminated from Study

Another recent study that received a tremendous amount of media attention this last month was conducted by Susan Hyman from the University of Rochester and presented at the recent International Meeting For Autism Research (IMFAR). The study cast doubt on the utility of the gluten free casein free (GF/CF) diet in autism.  View study abstract.
 
According to Dr. Hyman, this study was the first to evaluate the behavioral effects of the GF/CF diet on attention, sleep, stool pattern and core symptoms of ASD.  The study was designed using randomized double blind placebo controlled challenges.  Children 30 to 54 months of age participating in an early intensive behavioral intervention program were enrolled and started on a strict GF/CF diet for 4 weeks and then exposed to challenges of either wheat, milk, or both and monitored following the exposure.  While no favorable effects of the GF/CF diet were observed the authors report that such effects may occur for subgroups of children (e,g those with GI disorders) which may provide the basis for favorable reports from parents whose children are on the diet. 
 
In looking more closely at the study twenty one children were initially recruited to participate in the study.  Two were excluded for positive test results for anti-tissue transglutaminase (TTG), a marker for celiac disease and one for anemia, which is also a symptom of celiac disease. These three children were then excluded from the study and four additional children were not able to complete the study reducing the study size down to 14 total participants. Celiac disease (CD) is an immune-mediated enteropathiccondition triggered in genetically susceptible individuals bythe ingestion of gluten. The treatment of celiac disease is the strict elimination of gluten from the diet.  Read more.

SafeMinds Government Affairs and Advocacy Update

The Cloer Decision - A Potential Game Changer for Those Injured by Vaccines and Those That Have Claims in the Omnibus Autism Proceedings

Cloer v. Secretary of Health and Human Services, (2010 WL 1791422 (C.A.Fed.)) was decided on May 6, 2010. This decision may have a huge impact on the National Vaccine Injury Compensation Program (NVICP.) The United States Court of Appeals, Federal Circuit ruled that it is not reasonable to expect an individual to file a vaccine injury claim if the injury has not yet been recognized by the medical community.  Cloer specifically states, "Thus, we hold that, in general, for the purposes of section 300aa-16(a)(2), to be 'vaccine-related' the 'first symptom or manifestation of onset or of the significant aggravation of such injury' cannot occur until the medical community at large objectively realizes a link between the vaccine and the injury."

Prior to Cloer, the statute of limitations within the NVICP and OAP was three years from first onset of symptoms which in most cases is very subjective. The Department of Justice (DOJ), who defends the NVICP, and the claimant typically have different views on when the clock starts on a claim. When DOJ looks through a claimant's medical files they are looking for the very first out-of-the-ordinary note documented  a doctor has written about the patient's condition.  A formal diagnosis is not needed  for the DOJ to start their clock. Typically, parents in the OAP assume the date of their child's autism diagnosis starts their child's clock ticking, most of the time that assumption was wrong.

Cloer may have changed the start of the clock issue. If this decision survives the appeal process, the clock has not started yet for anyone. Once the clock is technically started, claimants will have three years to file claims in the program. Last week at the Advisory Committee of Childhood Vaccines (ACCV) meeting, the DOJ did not want to comment on the Cloer decision. It is DOJ's opinion that Cloer will not survive the appeal process. At the same meeting, Kevin Conway, an attorney for the petitioners in the OAP, speculated that this issue may ultimately have to be decided in Congress. Cloer will be an issue to watch in the coming months and years.

National Vaccine Advisory Committee (NVAC) Meeting Report

 

hhaNVAC held their quarterly meeting earlier this month in Washington D.C.  NVAC's main purpose is to advise the director of the National Vaccine Program (NVP) on the promotion of immunization and preventing adverse reactions to vaccines. NVAC is compromised of seventeen members who are either physicians, scientists, researchers or members of parent organizations concerned with immunizations.

The main focus of the June meeting was the flu vaccine. NVAC heard presentations that both evaluated the response to last year's H1N1 pandemic and provided information on the upcoming flu vaccine for the 2010-2011 flu season.

View the agenda

Click here to read the interesting take away messages from this meeting.


Advisory Committee of Childhood Vaccines (ACCV) Meeting

The quarthrsaerly Advisory Committee of Childhood Vaccines (ACCV) meeting was held June 10 and 11 in Rockville, Maryland. For those not familiar with the ACCV, it is the committee responsible for advising and making recommendations to the Secretary of Health and Human Services on issues relating to the operation of the National Vaccine Injury Compensation Program (VICP). The ACCV meetings are fascinating because the fundamentals of the VICP are presented.

Click here to read the highlights from this two-day meeting
National Institute of Environmental Health Public Interest Partners Meeting
 
niehsBoard Members Laura Bono and Jackie Lombardo represented SafeMinds Tuesday June 9th  when the National Institute of Environmental Health Sciences held their monthly meeting of the  Public Interest Partners (PIP). This month's meeting focused on Exposure Biology with guest speaker David Balshaw, Ph.D., Program Administrator. Through this program, NIEHS is developing technologies to measure environmental exposures, diet, physical activity, psychosocial stress, and addictive substances that contribute to the development of disease. The program will utilize technology that is able to create "fingerprints" (markers) of individual biological response that are indicative of activation of common pathogenic mechanisms such as oxidative stress, epigenetic modifications, and DNA damage; integration of biological responses with the development of biosensors; and application of these biomarkers to genome-wide association (GWA) studies of gene-environment interaction.  To view this presentation click here

SafeMinds is hopeful that these sensors can be used to help isolate the environmental trigger(s) for autism. We will be monitoring NIEHS's Exposure Biology Program and will keep you up-to-date on the latest research.
SafeMinds Board Members Spread Awareness with Print and Online Publications
 
katie wrightBoard member Katie Wright was also recently published in the Greenwich Times.  Katie is tireless in her dedication to setting the record straight when an article appears that only tells one side of the story.  This time Katie is responding to a biased report regarding vaccines and autism and shares to story of what happened to her son Christian after receiving 7 vaccines in one day. Read Katie's account

Katie, who is  a contributing editor for "Age of Autism," and attended IMFAR, also wrote an article regarding the Hyman study on the effectiveness of a gluten free casein free diet that we wrote about earlier in this issue.  The article, titled "One Part Autism, One Part Denial: A Recipe for Scientific Stagnation," covers deficiencies in the study in greater detail.

Bsallie board President Sallie Bernard's comments on the study, On-Time Vaccine Receipt in the First Year Does Not Adversely Affect Neuropsychological Outcomes were accepted by the journal Pediatrics and posted online. Read Sallie's letter.


heidiBoard member Heidi Roger posted a new blog this week on the Spectrum Magazine website after several months of "bloggers block".  Heidi's blogs provide much needed insight into the day in the life of a parent of a child with autism. Her lighthearted spirit and ability to find humor in life's most stressful moments is inspirational and provides much needed support to other parents to know they are not alone. Read Heidi's blog.

Your Support Makes the Difference in our Ability to Fund Research and Monitor and Respond to Government Agency Activity
 
SafeMinds Comes in Second out of 145 Charities!
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Thanks to your support - through voting, donating and spreading the word, SafeMinds came in a close second in the E-Bay Humanity Calls Tournament.  This will result in a donation of more than $6,000 to SafeMinds on top of the donations collected during the tournament.


SafeMinds Online Auction Starts July 20th!  
 



SafeMinds will run its online auction from July 20 - 30, 2010.  This is our key fundraiser of the year and we hope you will support the event.  Just a sampling of some of the items available:
  • One week at Extreme Sports Camp in Aspen, Colorado
  • $100 Barney's Gift Card
  • Burt's Bees Basket
  • Hotel Stays
  • Restaurant Gift Certificates
  • Concert Tickets
We need your support!

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Donate.
We need Auction items to add to our auction. If you have valuable merchandise, rare collectibles, business or personal services or access to unique events, we need your contribution today.
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Promote your business on the auction website and e-newsletters for as little as $100.  Click here for more information.

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Do you know someone who would be interested in supporting our cause? Please share the news of the online auction with your friends so they can be part of the excitement.

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Thank you in advance for your continued support! We look forward to your item donation and online bids!