E-Newsletter September 2008 #1

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:

TACA News
1. Find a TACA Meeting
2. TACA New Parent Seminar
3. Special Packages for Jack's Third Show
4. An Evening for Autism
General News
5. Oxygen therapy breathes new life into autism treatment
6. Somali Children in Minneapolis Racked with Autism
Vaccine News
7. Thoughtful House Comments on MMR Study and Welcomes Affirmation of Previous Measles Findings
8. CDC Misses Target With Flawed MMR/Autism Study
9. A shot of skepticism about vaccines won't hurt a bit
10. NIH Seeks Public Comment on Strategic Plan for Autism Research

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1 Find a TACA Meeting
Come to a TACA Meeting!

TACA holds monthly meetings in many locations throughout the United States that feature educational speakers on important topics and allow family members to connect with one another and stay on top of the latest information in the autism world. Each TACA group maintains a resource library of the latest autism books and tapes that can be checked out by members at no charge.

Check out our group listings: each contains information on TACA meetings and special events as well as a contact form.

Are you wondering what happens at a TACA meeting? Watch our video.

 
2 TACA New Parent Seminar

Saturday, November 1, 2008
Orange County, CA

Goals of the Seminar
After receiving the diagnosis of autism for a beloved child (or children), parents typically struggle as they search through various resources to locate information needed to help their child the fastest. The goal of the one-day New Parent Orientation is to provide parents and caretakers the “jump start” they need at the beginning of their journey from parents who have “been there, done that.” In addition to sage advice, parents who attend will receive: an overview of beginning therapies and biomedical intervention, where to go for what information, and recommended first steps. The seminar will be given by experienced parents who volunteer their time in providing the education new parents need.

Who should Attend?
This one-day seminar is geared for parents and caretakers of children affected by autism. Content will be provided in an “overview” presentation with web and book resource information for additional details. This seminar is geared to parents and caretakers new to the autism journey (less than 15 months) who have not yet started a behavioral/educational program or biomedical testing and interventions.

More InfoRegister Online

 
3 Special Packages for Jack's Third Show

Starting September 12, 2008 at 10 a.m. two special opportunities are available to Jack FM Listeners!

PREMIERE
VIP PIT PACK!

Only 50 pairs of these special tickets where you will see the bands up close and personal at the front of the stage will be available.  Each VIP PIT PACK is $500.

VIP PIT PACK includes:

  • Two (2) VIP Pit tickets

  • One (1) VIP parking pass

  • Two (2) Jack's Third Show Concert T-shirts

  • Two (2) passes into the exclusive TACA Party Lounge (with food and no-host bar)

  • One nice tax write-off and support for TACA!

Go to Shop TACA on September 12th at 10 a.m. to purchase your special PREMIERE VIP PIT PACK!

BACK STAGE EXTRAVAGANZA PACKAGE
TO MEET YOUR FAVORITE BAND!

Only FIVE pairs of the special packages are available where will meet the band of your choice!  These packages are available via AUCTION:

  • Two (2) VIP Pit tickets

  • One (1) VIP parking pass

  • Two (2) Jack's Third Show Concert T-shirts

  • Two (2) passes into the exclusive TACA Party Lounge (with food and no-host bar)

  • One (1) signed concert poster!

  • ONE extremely cool back stage meet and greet for two to SAY HI TO YOUR FAVORITE BAND!

  • One nice tax write off and support for TACA!

Go to Clothes Off Our Back on September 12th at 10 a.m. to bid on your special Backstage Extravaganza Package to MEET YOUR FAVORITE BAND!

For buyers of these special packages not only do you receive a memorable evening but you also receive a TAX-DEDUCTIBLE DONATION FOR YOUR CONTRIBUTION!

For more information about Jack's Third Show – see www.931jackfm.com

THANKS AGAIN JACK FOR YOUR CONTINUED SUPPORT!

 
4 An Evening for Autism

Saturday, November 1, 2008, 7 p.m.

Presented by: Tommy Bahama

At the Newport Beach home of Real Estate Entrepreneur Barry Saywitz

Click here to buy tickets: $150 per person

Tropical Attire

Your support can make a difference in the lives of people with autism!

Sponsored by: Citbank and Southwest Bank

Benefitting:

  • Easter Seals Southern California
  • Talk About Curing Autism
  • Autism Society
  • Newport Mesa Unified School District Autism Program

Food sampling from some of Orange County's finest restaurants:

  • Tommy Bahama's Island Grill
  • Scott's Seafood
  • Newport Rib Company
  • The Beach Pit BBQ
  • Maggiano's Little Italy
  • The Cheesecake Factory

3 Live Bands:

  • Steel Drums
  • Beatles Tribute
  • House Party

Hostesses from the Miss California Beauty Pageant and San Diego Charger Cheerleaders 

Media Sponsors

  • OC Metro Magazine
  • Orange County Business Journal
  • OC Family Magazine

Margaritas, Martinis, Wines, Beers and Coffee Bar Provided by:

  • Tommy Bahama Rum
  • La Paz Products
  • Starbucks
  • S.S. Imports
  • Edison Beer
  • Krol Vodka

 
5 Oxygen therapy breathes new life into autism treatment

Tuesday, September 2, 2008

Parents rave about hyperbaric oxygen therapy but many doctors and scientists are skeptical.

By SAM MILLER

THE ORANGE COUNTY REGISTER

Mark Westaway was a career scuba diver with 30 years experience with hyperbaric oxygen therapy. Before he opened Advanced Hyperbarics in Stanton with two partners in May, though, he didn't have much experience with autism.

But as clients cycled in and out of the submarine-like tanks recently, he was reading a dog-eared copy of "Evidence of Harm," the seminal book about a hypothesized vaccine-autism connection. He had plans to convert a side room to allow a doctor to treat autistic children. The gym in the back of the building, he said, would soon host parent support group meetings.

"I'd never been around autism," Mark says. "I had no idea. But it's been just amazing – we want to line our walls with photos of these kids."

In the past four years, hyperbaric oxygen therapy – in which patients breathe almost pure oxygen in a pressurized environment – has become a source of hope for thousands of parents looking for a way to treat their children's autism. That new market has provided a jolt to an industry that had served mostly scuba divers, stroke victims and people recovering from wounds.

That interest from the autism community is driving new research and investments that are pushing prices way down. In Orange County, two new HBOT clinics with vastly different styles have opened in the past year.

But it's a treatment that is viewed skeptically by much of the medical and scientific communities, who see it as the latest in a line of treatments that parents swear by and pay small fortunes for, but that don't stand up to research.

"At this point it's a non-medically supported therapy," said Michael Chez, director of pediatric neurology at Sutter Neuroscience Institute and the author of "Autism and Its Medical Management."

"I've taken care of many patients who've had it and I've seen little change in their autism," he said. "I'm not condoning or condemning it; I don't have enough knowledge about it. But it would stop me from doing what I wanted to do until they got through with that phase. Because I wouldn't want to be blamed for something that went wrong."

Other doctors believe in it. They say the pure oxygen in a pressurized environment reduces brain swelling and improves brain function, and heals the gastrointestinal problems many autistic children battle.

"With my (autism) patients I'm pretty much recommending they all give it a try, if it's financially feasible for them," said Dr. Robert Sears, the author of "The Vaccine Book" and a pediatrician in Capistrano Beach. "The vast majority of them have told me they've seen a benefit."

In addition to Advanced Hyperbarics, California Integrative Hyperbarics opened in Irvine a year ago. Parents from all over the nation pay $3,000 for 40 hour-long "dives" in the HBOT tanks. The facility also has rooms for behavioral therapy, a kitchen where parents can take cooking lessons for special autism diets, and television screens to consult with doctors in Florida. About 80 percent of its clients have autism.

That clinic was opened by Shannon Kenitz, a Wisconsin mom whose daughter, Grace, recovered from a rare and terminal mitochondrial disorder at the same time she began HBOT. She was running a similar clinic in Wisconsin when Lisa Ackerman, the founder of the local autism group Talk About Curing Autism, asked her to expand in Orange County.

Kenitz doesn't just want to open clinics; she's trying to make HBOT mainstream. As executive director of the International Hyperbarics Association, she has funded some of the first small studies of HBOT.

So far, though, HBOT is still viewed skeptically as a treatment for autism, and many health insurers won't cover it. HBOT is part of a "subculture of unscientific medicine," said Steven Novella, director of general neurology at Yale University School of Medicine.

"The autism community is ripe for such fake treatments. There is no cure for autism, the symptoms of autism often improve simply as a function of maturing so almost any treatment may falsely seem to work, and parents of children with autism are often desperate to do something to help their children and are therefore a vulnerable population," he said.

A large-scale study of HBOT as a treatment for cerebral palsy will conclude in Dayton, Ohio, next year. A smaller study of HBOT for autism at the M.I.N.D. Institute at UC Davis will be complete in a few months.

Up to now, though, the popularity of HBOT as an autism treatment has been driven largely by anecdotal evidence. According to surveys done by the Autism Research Institute, a think tank that promotes biomedical interventions, 60 percent of parents said HBOT helped their children. And on Internet message boards and in TACA support meetings, moms tell each other their stories.

Ackerman, for example, says that her son emerged from his 22nd dive and began having a conversation with the technician. She'd never seen him so verbal, so responsive – engaged like a typical kid.

"I was on my knees crying," Ackerman says.

Contact the writer: (714) 796-7884 or sammiller@ocregister.com

 
 
6 Somali Children in Minneapolis Racked with Autism

Ehiopian Review

August 30th, 2008

By Anne Szustek

Somali students comprise only 6 percent of the Minneapolis school system, but one-quarter of the children in the city’s early childhood autism programs. Health officials are baffled.

Somali Children in Minneapolis Racked with Autism

Rates of childhood autism among Minneapolis’ Somali community have been slowly rising over the past several years, say local health authorities. In 1999, there were 1,773 Somali-speaking students in the Minneapolis public school system—none of whom were in autism programs. But last year, 43 of the 2,029 Somali-speaking students, or about 2.1 percent of those in the school district, were enrolled in special education programs for the condition.

The Star Tribune reports that some 3.6 percent of Somali students were participating in autism-related programs as of July, around twice the Minneapolis school system’s average.

Statistics reported by the MinnPost show a graver prognosis for Minneapolis Somalis, with more than 12 percent of autistic students in district preschool and kindergarten programs said to speak Somali at home. The paper writes that more than 17 percent of those in the district’s early childhood autism program are Somali speakers.

Whatever the exact number of Somali autistic children in Minneapolis, “We’re definitely seeing it, and something is triggering it,” Dr. Chris Bentley told the MinnPost. Bentley is the director of Fraser, a Minneapolis-based nonprofit organization that provides assistance to families with autistic children.

Anne Harrington, autism specialist for the Minneapolis Public Schools, told Twin Cities CBS affiliate WCCO that the Somali students “are showing the more severe forms of autism, not the broad spectrum of autism that we see in our general population,” which includes Asperger’s syndrome, a milder type of autism in which social development is more delayed than cognitive development.

Opinion & Analysis: Culture, health, history are all factors

A lack of awareness of the disorder as well as social taboos are hampering efforts to determine whether the high rate of autism among the Somali population is a statistical anomaly or if there are genetic or other risk factors at stake. Amelia Santaniello, reporter and anchorwoman for WCCO, asked Huda Farah, a Somali woman who works on refugee resettlement issues with the Minnesota Department of Health, “Is there autism in Somalia?” Farah answered, “Not many, not many.”

An unnamed Twin Cities Somali woman told the Star Tribune that she had contacted politicians, government officials and the media to raise awareness of the large number of Somali students in her son’s autism programs. Nevertheless, stigmas have forbidden her from telling her relatives about her son’s disorder.

Farah told WCCO, “Many things attracted Somalis to Minnesota to stay. Good health cover and good education.”

The Somali community began arriving in Minnesota in 1993 after the first phase of that country’s civil war. The MinnPost reports that estimates as to the Somali population number anywhere from 15,000 to 40,000—the largest population outside of East Africa. Some 67 percent of them arrived in 2000, however, primarily settling in Hennepin County, where Minneapolis is located. St. Paul and Rochester also have significant Somali communities but there is little data on autism rates for those cities.

Given the lack of formal research, Twin Cities doctors have not been able to confirm if there is indeed a higher rate of autism among local Somalis. Dr. Stacene Maroushek, a pediatrician at the Hennepin County Medical Center, was quoted as saying in the MinnPost, “the impression that there’s an increasing rate of autism in the Somali community is definitely there. And people are wondering what’s going on.” The Minnesota Department of Health is assembling a “pre-pilot program” to help measure rates of autism among the state’s immigrant populations. University of Minnesota researchers are conducting similar studies with the department.

Genetics have been listed as one possible reason for the high incidence of autism. Cousin marriage is common in the Muslim Somali community. A study that was published in Science Magazine in July showed evidence suggesting a link between autism and family intermarriage.

A lack of vitamin D has been suggested as another cause. Sweden’s Somali population has seen similarly high incidences of autism—so much, in fact, that the community there has dubbed the disorder “the Swedish disease.” Two doctors, Susanne Bejerot and Mats Humble, suggested in the Swedish newspaper Dagens Nyheter that due to the lower levels of sunlight, those with dark complexions do not build up the vitamin as easily when living at more northerly latitudes. According to the doctors, “With current knowledge we can not rule out that Vitamin D deficiency is a strong factor behind the so-called autism epidemic.”

Somali immigrant Farah Osman told WCCO that she blames immunizations for her son’s autism. “In rural Somalia, there’s no immunizations.” Harrington told the MinnPost, “They’re given more [vaccines] then we get, and sometimes they’re doubled up. Then their children are given immunizations. In Somalia, their generations have not received these immunizations, and then suddenly they’re getting just a wallop of them in the moms and then in the babies.”

Plus, some refugees staying at camps in Kenya and Ethiopia received the same vaccinations three or four times due to poor record-keeping.

Related Topic: The debated link between autism and vaccinations

The U.S. Centers for Disease Control and Prevention maintains that no link has been determined between vaccinations and autism. Some parents of autistic children, like Jon and Terry Poling, disagree. In March the Polings won a lawsuit against a federal vaccine oversight body alleging their daughter Hannah became autistic after receiving a large dose of vaccine after she had fallen behind in her immunization schedule.

Thimerosal, a mercury compound used as a preservative in some pharmaceuticals such as vaccines, has been blamed for causing autism on the grounds that it allows toxins to leak into the nervous system.

A study published in 1998 in British medical journal The Lancet suggested a connection between the Measles-Mumps-Rubella (MMR) vaccine and an increased risk of autism on such grounds. Many of the study’s co-authors withdrew support from the study when it was discovered that the rates of autism diagnoses increased in areas where there was a lower rate of MMR vaccination, however.

Fears over autism are dissuading some parents from vaccinating their children. Some doctors are linking lower rates of MMR vaccinations with a sharp rise in the number of measles cases diagnosed in the United States. So far this year, more than 130 cases have been reported, compared to 42 for all of last year.

The supposed link between autism and heavy metals sparked a push by National Institute of Mental Health researcher Dr. Thomas Insel for a federally funded study of chelation as a cure for the disorder. “So many moms have said, `It’s saved my kids,’” he said. Chelation, traditionally used to cure lead poisoning, washes out heavy metals. Critics counter that it is unsafe and can cause the leaching of essential minerals such as iron and manganese from the body. Safety concerns have put Insel’s proposed study on hold for the time being.

Source: findingdulcinea.com

 
7 Thoughtful House Comments on MMR Study and Welcomes Affirmation of Previous Measles Findings

Age of Autism

Managing Editor's Note: The following is a statement from the doctors at Thoughtful House.

A study published yesterday in the Public Library of Science One (PLOS1), an on-line journal, failed to find evidence of measles virus in the intestinal tissue of 24 children with autistic regression and gastrointestinal symptoms. The findings contrast with those published in 2002 in which researchers from Ireland and the UK found measles in 75 of 91 biopsies from autistic children with GI inflammation, and in only 5 of 70 samples from non-autistic children . The children with autism in the 2002 study developed gastrointestinal symptoms and autistic regression after the MMR vaccine.

In the study published yesterday, conducted by three independent laboratories, only 5 of the 25 children developed these symptoms after the MMR vaccine and therefore, only these five are comparable to the 2002 study. This new study confirmed that results from the laboratory of Professor John O’Leary (one of the collaborators on the new study, and senior author of the 2002 study) were correct, and identical to the results obtained by the laboratories of the Centers for Disease Control and Prevention (CDC) and Dr. Ian Lipkin of Columbia University.

In that this new study affirms the reliability of Professor O’Leary’s laboratory and therefore of his previous findings, a major impact upon the current hearings in vaccine court is likely, wherein the government’s defense relies largely on the claim that Professor O’Leary’s finding of measles in the intestinal biopsy of Michelle Cedillo (a child with severe autism and epilepsy) was unreliable. The historical reliability of the measles assay used in Professor O’Leary’s laboratory is now confirmed.

The authors of the PLOS1 study make the erroneous claim that epidemiological studies have not supported an MMR-autism link, when in fact the CDC’s own study published in 2004 shows a significant association between autism and younger age at the time of MMR vaccination.

We are pleased to see that this new study provides further confirmation that children with autism suffer from gastrointestinal problems that deserve to be addressed as a priority.

Dr. Andrew Wakefield, Executive Director of Thoughtful House Center for Children, whose work has focused on intestinal disease, and on the possible role of MMR vaccine in regressive autism in children with GI symptoms, welcomed these new findings. Dr. Wakefield was a co-author of the 2002 paper that, unlike yesterday’s study, examined children in the majority of whom there was a clear temporal link between MMR exposure and regression. Dr. Wakefield comments, “The search for the ‘footprints’ of measles virus in the intestine is merited, based upon the previous findings and the intestinal disease that is commonly found in these children. This new study rules out only one possibility – that the measles virus must remain for the long term in the intestine. We need to consider that the MMR vaccine can cause autism as a hit-and-run injury, but not necessarily leave the measles virus behind.”

While we welcome this study as a piece in the ever-growing body of evidence that illuminates the complexity of autism and the possible factors that cause it, it is clear that yesterday’s study does not establish that the MMR vaccine is not associated with autism. This work examines one small part of a very complex equation, and in fact by affirming Professor O’Leary’s laboratory and assay methods, it inadvertently endorses the validity of his 2002 findings of vaccine-strain measles virus in the gut tissue of a group of children with autism.

Contact info:
Thoughtful House Center for Children
info@thoughtfulhouse.org
512.732.8400
www.thoughtfulhouse.org

 
8 CDC Misses Target With Flawed MMR/Autism Study

NAA says: Wrong Question Asked. Wrong Children Studied. Wrong Conclusions Reached.

Nixa, MO - A Centers for Disease Control and Prevention (CDC) study released today claims there is no link between the MMR vaccine and autism. The National Autism Association (NAA) says this study does nothing to dispel the growing public concern over a vaccine-autism connection and raises several questions concerning design and methodology.
For years, parents have claimed that MMR triggered their child's subsequent GI (gastrointestinal) disease and autism. In a 2002 paper where the majority of autistic children were found to have measles in their intestines, the children examined showed a clear temporal link between MMR exposure and regression. The CDC's attempt to replicate the 2002 study fell far short of proving the safety of the MMR vaccine.

The CDC study was designed to detect persistent measles virus in autistic children with GI problems. The assumption being if there is no measles virus at the long delayed time of biopsy, there is no link between autism and MMR. But NAA says this underlying assumption is wrong. The questions should have been: Do normally developing children meeting all milestones have an MMR shot, develop GI problems and then regress into autism? Do they have evidence of measles and disease in their colons compared to non-vaccinated age and sex matched controls?

In the current CDC study, only a small subgroup of children was the correct phenotype to study. From page 7, "Only 5 of 25 subjects (20%) had received MMR before the onset of GI complaints and had also had onset of GI episodes before the onset of AUT (P=0.03)." The other 20 autistic children in the study had GI problems but the pathology developed before the MMR vaccine. Additionally, the controls all received the MMR vaccine and had gastrointestinal symptoms. The controls should have been free of exposure to vaccine measles in order to make a comparison relevant for purposes of causation.
Inflammatory bowel disease in the absence of MMR RNA does not mean that MMR shot didn't precipitate the GI disease and didn't precipitate autism. A similar example would be rheumatic fever where the infection is cleared quickly but damage to the heart and/or brain last a lifetime.

Public confidence in the safety of vaccines is at risk until safety studies are performed that are required by law, ethics, and science. NAA calls for a vaccinated vs. non-vaccinated study comparing all health outcomes including autism. The CDC is in charge of vaccine safety, owns patents to vaccines (according to a UPI Investigative Report from 2003) and is in charge of promoting vaccines. The public should demand that vaccine safety be taken away from an agency with such conflicts and support HR#1973, the Vaccine Safety and Public Confidence Assurance Act."

For more information, visit www.nationalautism.org

 
9 A shot of skepticism about vaccines won't hurt a bit

Chicago Tribune

Julie Deardorff Health and fitness reporter
August 31, 2008

Measles cases in the U.S. are rising, and parents who reject vaccination are shouldering much of the blame. Nearly half of the 131 cases so far this year involved unvaccinated children, including 25 home-schooled kids in Illinois.

Health officials worry that as vaccination rates decline, herd immunity is lost, increasing the chance of a mass disease outbreak. Some pediatricians, meanwhile, are frustrated that they have to spend so much time convincing parents that vaccines such as the measles, mumps and rubella shot are safe.

Questioning in itself is not a bad thing, especially since the Internet has ignited an information explosion, some of it inaccurate. It does, however, reflect a larger crisis of confidence in public health officials and policy, which has developed partly because so many new, seemingly unnecessary vaccines have been added to the schedule and because no one can explain what causes, how to prevent or how to treat the new childhood disorders: asthma, allergies, attention deficit disorder and autism.

The number of vaccines children receive has tripled since the early 1980s. In 1982, the U.S. Centers for Disease Control recommended 23 doses of 7 vaccines for children up to age 6.

Today's typical 6-year-old has had 48 doses of 12 vaccines. (Toss in the flu shot, which may or may not be effective, and it boosts the number to 69 doses of 16 vaccines by age 18.)

Immunization against diseases that were once a childhood rite of passage and that conferred lifelong immunity, such as chickenpox, is now required for public school in many states, including Illinois. And the Hepatitis B vaccine is routinely given to babies the day after they're born, even though the illness is contracted through blood transfusions and sexual activity. Parents wonder: "Why can't the Hep B vaccine wait?"

But what really prompted questions was the 1997 decision by the Food and Drug Administration to remove the mercury-based preservative thimerosal from most vaccines as a precaution, due to concerns about the "theoretical potential for neurotoxicity" and the growing number of vaccines containing thimerosal on the immunization schedule. Though no evidence of harm has been shown, a mental link to thimerosal was made, a scarlet letter on vaccines that remains to this day.

Several recent developments have sparked other questions about vaccines:

• Dr. Bernadine Healy, the former head of the National Institutes of Health, told CBS News that she thinks "public health officials have been too quick to dismiss the [autism-vaccine] hypothesis as irrational."

• In March, government health officials conceded that childhood vaccines aggravated a rare, underlying cellular disorder in 9-year-old Hannah Poling that ultimately led to autism-like symptoms.

• America might be over-vaccinating its kids and health officials might want to re-evaluate and adjust the immunization schedule, according to a study in the New England Journal of Medicine. But not because of health concerns; the vaccines might just be unnecessary and waste a lot of money.

• A study in the journal Pediatrics found that 33 percent of pediatricians would strongly recommend the rotavirus vaccine if it were up to the doctor's discretion. But if it becomes an "official" recommendation by the American Academy of Pediatrics, that number goes up to 50 percent.

• Last year, a week after CDC announced that the influenza vaccine was effective against only 40 percent of the season's flu viruses, it recommended that all children over 6 months get a flu shot.

Vaccination, considered to be one of medicine's greatest achievements, is a personal decision that is often forced on people for the greater good. Parents who question vaccines are simply seeking information and advocating for their children.

We have the right to question everything that goes into our children's bodies, whether it's food, herbs, over-the-counter medications or prescription drugs. Vaccines, which like any medical procedure carry both benefits and risks, should not be an exception.

 
10 NIH Seeks Public Comment on Strategic Plan for Autism Research  

Public Comment on Strategic Plan Ends September 30th, next Budget Meeting September 10th

Public commentary on the Strategic Plan has begun and budgetary materials are available, on request (download 8/8/08 meeting slides and cost estimates). SafeMinds will issue an analysis of the continued disparity regarding the continued heavy funding of genetic/genomic studies and the lack of funding for environmental factor X gene interaction, vaccine specific research and the associated lack of expertise in the strategic planning process early next week. It is important that the public is aware of the opportunity to provide feedback to NIH and SafeMinds strongly encourages participation in this crucial stage of the process.

Responses will be accepted until September 30, 2008 via email to iacc@mail.nih.gov. Responses should be limited to two pages (approximately 1,000 words) and marked with the RFI identifier NOT-MH-08-021 in the subject line. The collected information will be reviewed by the IACC, may appear in reports, and shared publicly on the IACC website. Download the draft plan. Respondents are asked to organize their comments by sections of the draft Strategic Plan:
Introductory Material (including the Introduction, Vision Statement, Mission Statement, Core Values and Cross-Cutting Themes):

  1. When Should I Be Concerned?
  2. How Can I Understand What Is Happening?
  3. What Caused This To Happen And Can This Be Prevented?
  4. Which Treatments And Interventions Will Help?
  5. Where Can I Turn For Services?
  6. What Does The Future Hold?

Development Process for the IACC Strategic Plan for Autism Spectrum Disorder Research References

The next meeting of the Strategic Plan Implementation Workgroup addressing budgetary requirements will be held on September 10th. Register for 9/10 meeting. There is also a meeting of the IACC Subcommittee on Services scheduled for September 15th. Register for the 9/15 meeting.

 
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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