E-Newsletter March 2008 #4 - Mini Edition

Here is your update on TACA (Talk About Curing Autism). If you are new to our site... WELCOME! This newsletter is produced two to four times each month.

We are an autism education and support group. We want to make this e-newsletter informative for you. As always, contact us your thoughts and/or questions so we can improve it.

We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to autism. Our main goal is to build our community so we can connect, share and support each other.

Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.

In this edition:

1. 5th Annual TACA Family Picnic - June 1, 2008
2. For World Autism Day: APRIL 2 - Jenny McCarthy  David Kirby for a full hour on Larry King Live
3. Autism the Musical:  Watch Free on HBO
4. The Next Big Autism Bomb: Are 1 in 50 Kids Potentially At Risk?
5. Autism Organizations Support Dr. Wakefield

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1 5th Annual TACA Family Picnic - June 1, 2008

Please join Jenny McCarthy for the 5th annual TACA Family Picnic which will be held on June 1, 2008 at Camp James in Irvine.  This extremely popular family event provides a safe and fun picnic for children affected by autism and is a primary fundraiser to help TACA continue to provide important services to families affected by autism at no cost.  

Read more about the picnic.

Register Online
Adults
13+ years
Child
3-12 years
Baby
0-2 years
Early Registration
Until April 30
$17
$12
free
Regular Registration
May 1-29, 5 p.m.
$20
$15
free
On-site Registration
June 1**
$25
$20
free

**There is no guarantee that on-site tickets will be available. This event will sell out.

Interested in sponsoring/exhibiting at the picnic?

Sign up for sponsorship or to donate an item for the silent auction.

Questions? Contact us.

 
2. FOR WORLD AUTISM DAY: APRIL 2 - Jenny McCarthy  David Kirby for a full hour on LARRY KING LIVE

On World Autism Day, the controversy over vaccines! Do they contribute to autism, or is there a greater risk going without? Actress and mother of an autistic child, Jenny McCarthy, debates the issue with medical professionals.

Other guests for the show:

  • Dr. David Tayloe - AAP
  • Dr. Jay Gordon -Pediatrician
  • And other guests

Show times and more info

Jenny McCarthy's Media schedule

 
3. Autism the Musical:  Watch Free on HBO

What a beautiful gift. HBO allows you all to watch Autism The Musical online (for a short period of time)  

Forward it. Watch it. Enjoy it. Happy pre-Autism month!

Watch Autism The Musical.

 
 
4. The Next Big Autism Bomb: Are 1 in 50 Kids Potentially At Risk?

By David Kirby, reprinted from The Huffington Post  

On Tuesday, March 11, a conference call was held between vaccine safety officials at the US Centers for Disease Control and Prevention, several leading experts in vaccine safety research, and executives from America's Health Insurance Plans, (the HMO trade association) to discuss childhood mitochondrial dysfunction and its potential link to autism and vaccines.

It was a sobering event for all concerned, and it could soon become known as the Conference Call heard 'round the world.

The teleconference was scheduled by a little known CDC agency called the Clinical Immunization Safety Assessment (CISA) Network, a consortium of six research centers working on "immunization-associated health risks," in conjunction with the CDC's Immunization Safety Office and the health insurance lobby -- whose companies cover some 200 million Americans.

The hot topic of the day was mitochondria - the little powerhouses within each cell that convert food and oxygen into energy for use by the body. Recent news events have implicated mitochondria in at least one case of regressive autism, following normal development.

Some researchers on the call reported that mitochondrial dysfunction is probably much more common than the current estimate of 1-in-4,000 people. The potential implications for autism, then, are staggering.

"We need to find out if there is credible evidence, theoretically, to support the idea that childhood mitochondrial dysfunction might regress into autism," one of the callers reportedly told participants.

"THE CLOCK IS TICKING"

One person on the call (those interviewed for this article asked to remain anonymous) told me that, "the CDC people were informed, in no uncertain terms, that they need to look into this issue immediately, and do something about it." The clock is ticking, they were told, and if they don't respond, the information will be made public.

Still, the doctor said, he was enormously impressed by the "seriousness" with which CDC officials treated the possibility of a link between mitochondria, autism and possibly vaccines as well.

In the recent landmark Hannah Poling case, filed in Federal "Vaccine Court," officials conceded that Hannah's underlying mitochondrial dysfunction was aggravated by her vaccines, leading to fever and an "immune stimulation that exceeded metabolic reserves."

But on March 6, CDC Director Dr. Julie Gerberding claimed that Hannah's case was a rare, virtually one-of-a-kind incident with little, if any relevance to the other 4,900 autism claims currently pending in the court -- or to any other case of autism for that matter.(There were conflicting accounts about whether Gerberding was on the call or not).

Since then, however, Dr. Gerberding and other CDC officials were made aware of a Portuguese study, published last October, which reported that 7.2% of children with autism had confirmed mitochondrial disorders. The authors also noted that, "a diversity of associated medical conditions was documented in 20%, with an unexpectedly high rate of mitochondrial respiratory chain disorders."

"Apparently, the Portuguese study really got their attention," one of the participants said. "It's a highly significant finding. And it's worrisome enough to definitely look into. I think the CDC people know that."

They also know that some reports estimate the rate of mitochondrial dysfunction in autism to be 20% or more. And the rate among children with the regressive sub-type of autism is likely higher still.

Vaccine safety officials on the March 11 call may have been open to discussing mitochondria and autism, but they were probably highly unprepared for what was to come next.

One doctor reported his findings from a five-year study of children with autism, who also showed clinical markers for impaired cellular energy, due to mild dysfunction of their mitochondria.

The biochemistry of 30 children was studied intensively, and in each case, the results showed the same abnormalities as those found in Hannah Poling, participants said. Each child had moderate elevations or imbalances in the exact same amino acids and liver enzymes as Hannah Poling.

All thirty children also displayed normal, healthy development until about 18-24 months of age, when they quickly regressed into clinically diagnosed autism (and not merely "features of autism"), following some type of unusual trigger, or stress, placed on their immune system.

Researchers explained on the call that some data show that mitochondrial dysfunction can convert into autism "in numbers that make it not a rare occurrence," one participant told me. They explained this as "a distinct syndrome; not a mixed bag at all. Every kid had mild mitochondria dysfunction and autistic regression."

Another surprise came when one researcher announced an "inheritance pattern" that linked each case through the genetics of the father: In families where two cousins had autism, the genetic link was always through the father.

This unexpected discovery would clearly implicate nuclear DNA inheritance, and not mitochondrial DNA, which is inherited only through the mother.

Gerberding and others had previously insisted that Hannah and her mother, Teri Poling, both had the same single point mutation in their mitochondrial DNA. CDC officials asserted that Hannah had a pre-existing disease, a rare genetic glitch in her mitochondria, that may well have manifested as "features of autism" on its own, perhaps even without an environmental trigger.

"It's not in the mitochondrial DNA, and it's not rare," one participant confirmed. In fact, he said, many people probably carry the nuclear DNA mutation that confers susceptibility to mitochondrial dysfunction, they just don't know it.

1-in-50 GENETIC RISK?

On the call, speculation on the prevalence of a genetic mutation that could confer mild mitochondrial dysfunction in the general population ranged from about 1-in-400, to a staggering 1-in-50, or 2% of all Americans.

There was talk about the urgent need to do mapping studies, and find the locus of this gene. Some of the researchers said they want to test all 30 children for the actual DNA mutation. There was some expectation that they might discover that the mutation goes back generations, so parents and grandparents might be tested as well.

One belief is that a particular mutated gene may have become prevalent over the centuries, because of selective advantage. Mild mitochondrial dysfunction reportedly has been associated with intelligence, because it can increase activity of the brain's NMDA receptors. A large number of receptors can produce increased intelligence, but it can also increase risk of brain disease, one doctor explained to me. It's possible that increased receptor activity acts in same way.

But not everyone agrees that mitochondrial dysfunction is a purely inherited affair. Some researchers believe that, while a susceptibility gene for mitochondrial problems certainly exists, some type of environmental trigger, or "adversity," as one doctor put it, is needed to turn the mutation into a dysfunction.

The medical literature is replete with studies on mitochondrial health and the adverse impact of mercury, aluminum and other toxins. Even AIDS drugs like AZT and prenatal alcohol consumption can damage mitochondria and impact cellular energy.

The mercury-containing vaccine preservative, thimerosal, for example, "can definitely kill cells in vitro through the mitochondria," one teleconference participant told me. "And some people are beginning to suspect that the dose of hepatitis B vaccine given at birth might be interfering with proper mitochondrial function in certain children."

While the cause of mitochondrial dysfunction is up for the debate, so too is its potential effect on regressive autism.

All the researchers I spoke with agreed that, in many cases, there was an underlying, asymptomatic mitochondrial dysfunction, aggravated by some other stressful event imposed on the child's immune system, resulting in autism.

Such "metabolic decomposition" occurs when a child's system simply "cannot meet the energy demand needed to fight the stress of illness," one doctor explained.

But what causes the stress? That is a very big question.

Continue reading this article.

 
5. Autism Organizations Support Dr. Wakefield

Wakefield and Colleagues Should Be Knighted, Not Persecuted - U.K. Medical Inquiry Threatens Scientific Inquiry Progress in Autism  

 The National Autism Association (NAA), SafeMinds, Unlocking Autism, Generation Rescue, Autism One and Talk About Curing Autism (TACA) wish to express support for Dr. Andrew Wakefield and his colleagues who are unjustly facing a fitness to practice hearing by the General Medical Council (GMC) of the United Kingdom. Dr. Wakefield, a pioneer in autism research and treatment, begins his historic testimony today. The undersigned organizations, along with other U.S. families affected by autism, join in spirit with the U.K. families who are demonstrating today at the GMC offices in London.

The GMC prosecution is a frontal attack on the health and well-being of those around the world who have an autism spectrum disorder. Scientific and medical progress in this field will only be made through open minded thinking on how best to treat and prevent the disabling conditions that accompany this complex diagnosis. The GMC's actions have a chilling effect on the practice of medicine and suppress honest and open scientific inquiry.

Dr. Wakefield and his team of elite researchers at the Royal Free Hospital in London did exactly as they were called to do by their professional curiosity and ethics - find out why so many children have autism and whether gastrointestinal problems play a role in the disorder. Their seminal 1998 paper published in The Lancet reported a series of observations whose common features had coalesced as a new syndrome, autistic enterocolitis. The parents of many patients noted a link between the onset of symptoms and receipt of the measles-mumps-rubella combination vaccine (MMR), but out of an abundance of caution the Lancet paper claimed that the study did not prove an association between MMR and autism. Rather, it prudently called for further research.

The underlying goal of the GMC hearing is to take Dr. Wakefield and colleagues to task for daring to even hint at a vaccine-autism link. The "official" reason is to determine if the scientists profited from their research, but in fact the inquiry is a desperate tactic by vaccination proponents to quiet those who raise questions about the safety of current vaccination practices such as combining three live viruses into the single MMR injection. Recent developments in the U.S. have vindicated Dr. Wakefield's hypotheses. Gastrointestinal problems are now known to be present in many autistic children and gastroenterology has become a standard discipline for autism medical care. The U.S. court for vaccine injury compensation has found that vaccination against multiple diseases on one day led to a case of regression into autism in a child who was developing normally.

Dr. Wakefield should be knighted for his cutting-edge creativity, not persecuted. He made his hypotheses a decade ago, and the rest of science is just now catching up. The public health bureaucrats and their agents - in the U.K. and the U.S. - are more interested in covering up their own misdeeds, poor judgment, or inaction. These include a refusal to make the single monovalent measles, mumps, and rubella vaccines broadly available in response to legitimate concerns over the safety of the triple MMR injection, a refusal to conduct a valid study comparing the rate of autism and other health outcomes in vaccinated and unvaccinated groups, and a refusal to reexamine infant immunization schedules to increase safety. Autism spectrum disorder rates in the U.K. may be as high as 1 in 66 and in the U.S. they are said to be 1 in 150 children, but the public health establishment refuses to declare autism a health emergency, refuses to apply the resources to understanding the disorder, and refuses to conduct the type of unbiased research required.

The U.K. medical establishment has driven Dr. Wakefield from his home, but his loss is America's gain. We are blessed to have Dr. Wakefield as Director of the Thoughtful House Center for Children in Austin, Texas. In a few short years, this has become an international mecca for research, education, and treatment for children with autism. We look forward to a fair GMC hearing and to further ground-breaking research from Dr. Wakefield and his team.

For more information about autism and the undersigned organizations, visit www.autism.org. Details about today's rally in London are available at http://www.cryshame.com/.

 
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. TACA does not engage in lobbying or other political activities.

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