Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 Here is a letter that was sent out yesterday to the cofounder of Autism Speaks from the National Autism Association, thought some of you might be interested. -BJ Bob Chairman and Chief Executive Officer, NBC Universal 30 Rockefeller Plaza New York, NY 10112 February 22, 2005 Dear Mr. , As a non-profit organization created to provide support and information to families affected by autism, the National Autism Association is very concerned about some of the inaccuracies thus far presented in this week's Today show/MSNBC autism series. While we applaud your efforts to raise awareness of the epidemic of neurological disorders among children in this country, some of the information presented is not only erroneous, but could thwart caregivers as they search for treatments to help their affected loved ones. The most glaringly false and potentially damaging claim so far was from Bazell's report on Monday's Nightly News segment. The statement that vaccines have been cleared as playing a causative role in the autism epidemic exhibits extremely careless reporting, or perhaps exposes the power source behind the report. The only entities to have " cleared " vaccines from playing a causative role are the drug companies that made the vaccines and those with ties to the industry. In fact, all of the researchers without ties to the pharmaceutical industry who presented their findings at the IOM's February, 2004 meeting on mercury-containing vaccines and autism found a positive association. If NBC is genuinely interested in presenting the truth to its viewers, why are you not investigating the IOM's curious decision to deflect attention away from thimerosal (mercury) in light of so much evidence supporting its link to neurological disorders countered solely by researchers tied to and funded by drug companies? NAA hears from increasing numbers of parents and caregivers that their children are making tremendous strides through biomedical interventions that rid the body of mercury. By directing parents away from this avenue, you are potentially denying children with an autism diagnosis the medical treatment they desperately need. Another misleading and harmful statement was made on the Today show's inclusion of remarks by a physician stating that thimerosal was removed from vaccines in 1999 so autism rates would have gone down by now if mercury-containing vaccines were to blame. Thimerosal was not removed in 1999. The FDA made a rather polite request in 1999 to vaccine manufacturers that they start producing mercury-free vaccines. This phasing-out process took years, with some mercury-containing pediatric vaccines maintaining expiration dates into 2004, ensuring that hundreds of thousands of children continued to be overexposed to a known neurotoxin. Details regarding this and other thimerosal-related issues are found in the U.S. Government Reform Committee's " Mercury in Medicine " Report transcripts available through the offices of Congressman Dave Weldon, MD, (R-FL), Congressman Dan Burton, (R-IN), or online at http://www.nationalautismassociation.org/library/MercuryinMedicineReport5-03.p df We request that you correct these inaccuracies and provide follow-up on medical interventions that can benefit so many children with neurological disorders such as autism and ADHD. Any of the renowned scientists and researchers that comprise our scientific and biomedical advisory boards, www.nationalautismassociation.org, would be happy to share their insights and expertise on not only the plethora of scientific data confirming the thimerosal/autism link, but also on the practical measures that can meaningfully help children with an autism diagnosis. For the vast majority of children that were born completely normal but later regressed following exposure to mercury far exceeding federal adult guidelines, what led to their eventual autism diagnosis is very clear. NBC owes its viewers an honest look at the entire picture of what happened to nearly an entire generation of children overexposed to mercury through vaccines. Ignoring the truth will not make it go away. Sincerely, The National Autism Association Officers and Board Members Jo Pike Fournier Rita Shreffler Bono Lori McIlwain Cc: Neil Shapiro, Jeff Zucker, Verdi, Bill Wheatley, Bazell, Jane Weaver, Dorie Klissas, Steve Capus, , Tom Touchet, Eliott Sparkman- Think Autism. Think Cure. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 <<< BJ - Thanks for passing that along! I noticed how the mercury idea was quickly dismissed by the Dr. in this report. I am very upset and shocked with regard to a statement that was made by a Dr.on another segment of this special. The Dr. from Univ. of Washington stated that for a non-verbal child if speech was specifically targeted between 18 and 33 months, the chances of recovery were very good. This inherently implies that if your're past that time frame there is no hope. Surely to God, she has read some research on " late talkers " ?? So, how about for those past that 33 month deadline? Talk about a slam.!>>> I think we all have to step back from this a minute and look at the intent of what NBC is trying to do. Their intent on hosting this series was not to speak to all of us who are immersed in this and have a great knowledge base. They are speaking to all of those parents who are where we were one year, two years, five years ago when we were all wondering, " What is wrong with my child? " Their intent in these statements, in my opinion, was not to " slam " children who are outside the 33 month window (though I will admit my own dev. ped has quoted the same words to me), the intent would seem to me to get those parents who heard their ped. say " don't worry " a little more fired up into seeking out more opinions on their child. With early intervention pretty universally agreed upon as a predictor for success, this statement would not seem to be a slam but a prod to trust your instincts for your child and get help. > > Does anyone have any comments on that particular issue? I'd also like to say, that overall that NBC report was disappointing in that it merely skimmed the surface of the topic. It so far has provided me with no new information. I suppose it provided the " lay " public with an awareness of the word autism and how to spell it! > P.n Again, I find this a particularly harsh statement regarding the NBC coverage of this issue. Of course they skimmed the surface of the topic. Their intent is not to educate those who already know what EFA, GCFC, PDD-NOS and all the other acronyms stand for. Their intent was twofold from what I could see: to spur those who are wondering about their own children to seek help, and also to spur those who were unaware of the epidemic levels of this disorder to be aware, help those who are affected, donate to the cause and basically be as much a part of this effort as those who all routinely donate towards AIDS, JD, Breast Cancer research and a host of other disorders that have gotten press through celebrity. I would instead applaud NBC for their attempts to raise awareness and get the ball rolling on more funding for the research that will certainly benefit all of us who are wrestling with this difficult disorder. Amy Primorac Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 I too am very dissapointed in the segment. Parents that are envolved in the " system " would have a better understanding of what they were talking about that a parent who wasn't. Too many innuendo's and the whole thing was very vauge!! I am in the " system " and I was left very confused and with alot of questions!! --- Patti n <jessenpatti@...> wrote: > > BJ - Thanks for passing that along! I noticed how > the mercury idea was quickly dismissed by the Dr. > in this report. I am very upset and shocked with > regard to a statement that was made by a Dr.on > another segment of this special. The Dr. from Univ. > of Washington stated that for a non-verbal child if > speech was specifically targeted between 18 and 33 > months, the chances of recovery were very good. > This inherently implies that if your're past that > time frame there is no hope. Surely to God, she has > read some research on " late talkers " ?? So, how > about for those past that 33 month deadline? Talk > about a slam.! > > Does anyone have any comments on that particular > issue? I'd also like to say, that overall that NBC > report was disappointing in that it merely skimmed > the surface of the topic. It so far has provided me > with no new information. I suppose it provided the > " lay " public with an awareness of the word autism > and how to spell it! > P.n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2007 Report Share Posted July 29, 2007 New Genetic Model for Autism May Speed Research A team of researchers, led by Cold Spring Harbor Laboratory (CSHL) and Albert Einstein College of Medicine, has published a paper in the July 31, 2007 issue of Proceedings of the National Academy of Sciences, citing the Interactive Autism Network (IAN) and the Autism Genetic Resource Exchange (AGRE). The paper describes a unified genetics model that predicts two different risk patterns for autism. This marks the first time IAN has been cited in a major research publication, just three months after its launch. Read more. New Genetic Model for Autism May Speed Research A team of researchers, led by Cold Spring Harbor Laboratory (CSHL) and Albert Einstein College of Medicine, has published a paper in the July 31, 2007 issue of Proceedings of the National Academy of Sciences, citing the Interactive Autism Network (IAN) and the Autism Genetic Resource Exchange (AGRE). The paper describes a unified genetics model that predicts two different risk patterns for autism. This marks the first time IAN has been cited in a major research publication, just three months after its launch. Read more. Janice <jscott@...> wrote: You got it! Personally, I find it very reasonable.... nothing like non-profit to soothe the bank-book. Not only that... it actually works! Janice [sPAM] [ ] NACD - Fees Just want to get this straight. Janice, can you confirm. Looking at the fee schedule our kids would be level 2 thus a 950.00 evaluation and then 185.00 per month that includes re evaluation quarterly??? Someone,please clarify. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 http://www.whatkindofworlddoyouwant.com/videos/view/id/408214 Subject: [CelticSparklers] Help Find Cure for Autism Hello All! THIS CHECKS OUT WITH SNOPES.COM as legitimate. The band, Five for Fighting, is generously donating $0.40 to Autism Speaks for*each time* the video is viewed . When you have a moment, please visit the link below to watch the video and pass it along to your friends and family. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal!Link to the site: Five for Fighting http://www.whatkindofworlddoyouwant.com/videos/view/id/408214 Thank you! Need to know the score, the latest news, or you need your Hotmail®-get your "fix". Check it out. Start the year off right. Easy ways to stay in shape in the new year. Quote Link to comment Share on other sites More sharing options...
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