E-Newsletter June 2007 #2

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 a California autism education and support group. We want to make this e-newsletter informative for you. As always, email 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 month's edition:

LA Times/Daily Pilot Covers TACA & Jenny McCarthy

  1. TACA's 3rd Annual Friends & Family Campaign - Final Month!
  2. TACA Group Meetings
    1. Corona (Inland Empire)
    2. Costa Mesa (Orange County)
    3. Los Angeles
    4. San Diego
    5. Santa Rosa (Sonoma County)
    6. Torrance (South Bay)
    7. Visalia (Tulare County/Central San Joaquin Valley)
    8. West Hills (San Fernando Valley)
  3. TACA Cooking Classes
  4. TACA Calendar Quick View
  5. General News
    1. OC Register series by Yvette Cabrera on Regional Center Orange County
    2. More on Autism Speaks
  6. Vaccines News
    1. Omnibus Hearings - Children Affected by Autism Get Their Day in Court
    2. More from David Kirby - See You in (Vaccine) Court
  7. Frequently Valued Information (FVI) – a new column
  8. Upcoming TACA Fun Activities
  9. Vendor Announcements
  10. Books & Web Sites
  11. TACA Volunteers NEEDED!
  12. Conferences, Seminars & Workshops
  13. Personal note

[go to home page]

LA Times/Daily Pilot Covers TACA & Jenny McCarthy

Jenny McCarthy to represent autism group

By Sue Thoensen

Talk About Curing Autism, a Newport Beach-based organization helping families with children affected by autism, has announced that actor Jenny McCarthy will be its new spokeswoman.

McCarthy, whose son Evan was diagnosed with autism in 2005, is the author of the book "Louder than Words — A Mother's Journey in Healing Autism," set to be released in September.

McCarthy will be involved with the group's fundraiser "Ante Up for Autism" in October. She will participate in live online chats via the group's website and will post her own ongoing blog once the book has been published.

Lisa Ackerman, founder and director of Talk About Curing Autism, said her organization is blessed to have "such an outspoken friend" in McCarthy, and that "her story, her son's journey with autism, and her efforts to advocate and reach out to help families affected by autism should be commended."

For more information, call Talk About Curing Autism at (949) 640-4401 or go to www.tacanow.org.

— Sue Thoense

More activities including; a fundraiser “Ante up for Autism” on October 20, 2007 in Newport Beach CA, live on-line chats via the TACA website, Jenny’s on-going blog, and other activities to be announced soon. All announcements will be provided on the Jenny pages.

For Ante Up for Autism fundraiser details please see www.anteupforautism.org

1 TACA Family & Friends Campaign

LAST ANNOUNCEMENT: Please help TACA assist your family, as well as the many families entering the autism journey, through your participation in the 2007 TACA Family and Friends Campaign.

Since TACA was started, so many people have asked, "How can I help?" We have always responded by telling them to take care of their family and beloved children.

The last two years we have asked them to go a little bit further - to reach out to their extended community and raise autism awareness and funds to help TACA continue to fulfill its mission of improving the quality of life for families living with autism. You all came through amazingly, and over the last two years, the TACA Family and Friends campaign has raised more than $65,000!! This has allowed TACA to hold six New Parent seminars, two Parent Education seminars, and distribute over 750 autism Journey Guides!! What a difference your help has made for new families struggling with the autism diagnosis.

We hope you can come through for us again this year -- to help us meet our goal of providing TACA programs and services free to all families. Through your fundraising, you can help TACA assist not only your family, but the many families entering the autism journey. TACA adds about 50 new families each month. They need our help and strength so they can get off to the right start. Thank you for sharing your time and your passion!

Contact us to participate in the TACA Family and Friends campaign by requesting your free fundraising and awareness kit or create your own personalized fundraising page at www.firstgiving.com/tacanow.

Win incentives based on your fundraising!

  • Raise $25 and you will receive the TACA "One in 150 Car Magnet"

  • Raise $100 and receive the car magnet and a TACA travel mug

  • Raise $250 and receive the car magnet, a TACA travel mug and your choice of a TACA t-shirt or baseball cap

  • Raise $1,000 and receive all of the above items along with a TACA VIP Picnic package for 4

Special thanks to all the TACA Friends & Family participants! Your hard work, TACA fundraising initiative, and efforts to spread autism awareness are GREATLY appreciated!  THANK YOU!

LAST FRIENDS & FAMILY FUNDRAISER AT SUPER SUPPERS COSTA MESA! 
Don’t know what to make for GFCF Dinner? Here’s the answer!

Tuesday, June 26 & Wednesday, June 27  - Super Suppers will be featuring six entrees that can be made Gluten Free/Casein Free (GFCF)!

June GFCF menu features:  Applesauce Chicken, Shanghai Pork Tenderloin, Chicken Fried Rice, Dill Salmon & Lemon Rice, Chicken Curry & Rice, and Bacon Meatloaf.

Each month, Super Suppers supplies a menu of 12 healthy & delicious entrees (4 to 6 servings each), all designed by professional chefs. You can schedule a session online, come in during walk-in hours of 11 a.m. to 7 p.m., or stop by and choose items from the Grab and Go Freezer. These amazing dishes freeze and re-heat well to accommodate for your busy life.

For reservations and more information:

Phone 714-957-1773 – www.sscostamesaca.com

Address: 1450 Baker St., Costa Mesa (Located in the Target center at Harbor & Baker)

NOTE:  A portion of the proceeds will be donated to TACA for our Friends & Family efforts! THANKS, SUPER SUPPERS!

2 TACA Has Eight California Meeting Locations
Corona (Inland Empire)                                                                                 

Costa Mesa (Orange County)

Los Angeles (Newly Added!)

San Diego

Santa Rosa

Torrance (South Bay)

Visalia (Tulare County/San Joaquin Valley)

West Hills (San Fernando Valley)

 
 3 TACA GFCF Cooking Classes
Chef Lisa Ackerman will provide a brief gluten-free/casein-free cooking class featuring a variety of “kid favorite” foods that are healthy options, fast to make, and crowd pleasers for the family. Join us for fun and GFCF kid-friendly foods!

California Integrative Hyperbaric Center, 16251 Laguna Canyon Road Suite 175, Irvine CA 92618, 949-428-8878

June 8 – 11:30 a.m. - 1 p.m.
June 27 – 11:30 a.m. - 1 p.m.

Per person fee $15

Menu based on registered attendees' selection of TACA’s most popular recipes.

Register online

 4 TACA Calendar Quick View
J U N E 2 0 0 7
Sunday
Monday
Tuesday
Wednesday
Thursday
Friday
Saturday

1 2
3
West Hills Meeting
4

5
6
7
8

9
Costa Mesa Meeting: School Shadowing & Inclusionary Programming Best Practices
10

11 12
Santa Rosa Meeting

13
Prescription for School Success with Dr. Geeta Grover

Adaptive Recreation Programs for Kids and Adults

14
Los Angeles Meeting: Doreen Granpeesheh
15

16
Corona Meeting: Strategies to manage difficult behaviors

17
18
Torrance Meeting:
Assessments & Testing
19

20
21 22
Lyme-Autism Connection Conference (through Sunday)
23
24
25 26
San Diego Meeting: Geoff Radoff, Autism One Update
27
Medical Testing for Autism Spectrum Disorder: Important Starting Points
28 29  30
J U L Y 2 0 0 7
Sunday
Monday
Tuesday
Wednesday
Thursday
Friday
Saturday
 1 
West Hills Meeting
 2 3 4 5
Wrightslaw Special Education Law and Advocacy Training
6

7

8

9 10
Santa Rosa Meeting
11 12
Los Angeles Meeting: Parent Round About

Dreams at Work Apraxia Conference
13

14
Costa Mesa Meeting: Medical Intervention for Children on the Autism Spectrum

15 16
17 18
Visalia Meeting

Best Practices in Education for Asperger’s (through Saturday)

19

20 21
Corona Meeting

Cutting Edge Treatment in Autism
22

23
Torrance Meeting: Lyme Disease & Autism
24
San Diego Meeting: Tomatis Listening Therapy
25
Effects of Hyperbaric Oxygen and Autism Spectrum Disorders
26 27

28

29

30

31

   
5 General News
Article A OC Register series by Yvette Cabrera on Regional Center Orange County

If you have a comment please take a moment to write a Yvette at ycabrera@ocregister.com

Tuesday, June 5, 2007

Autism nonprofit says problems with agency persist

YVETTE CABRERA, Register columnist

In 2000, when Christina Adams' son was diagnosed with autism she noticed a disturbing problem within the Regional Center of Orange County, the state-funded agency that was charged with coordinating and funding services to treat her son.

Back then she described the problem as the RCOC's unwritten "Don't ask, don't tell" policy when dealing with parents of autistic children. If a parent didn't request a service or ask about a program, the RCOC didn't tell them the services or programs were available, said Adams, an Orange County-based journalist and author of the book "A Real Boy: A True Story of Autism, Early Intervention, and Recovery."

"They pretty much plop you into the system, take a number and this is what we offer," said Adams. "At that time I learned I was surrounded by a budding epidemic of autism…It was everywhere and everyone was experiencing these terrible problems."

A first-person article that Adams wrote for The Los Angeles Times in 2001 included comments from the RCOC saying it was looking for ways to improve and intended to increase support for in-home services. Six years later, however, Adams said, the problems remain.

"They said they were going to change and do things differently and offer families early intervention hours," Adams said. "At that time they said 'Just give us a chance.' Well, we've given them lots of chances and most people say it's the same as it ever was."

This lack of progress is echoed by Lisa Ackerman, founder and executive director of the Orange County-based nonprofit Talk About Curing Autism (TACA), a support group for families affected by autism that aims to close the gap between the autism diagnosis and effective treatments.

TACA serves almost 2,300 families across California (nearly 1,000 in Orange County) who are served by a network of 21 regional centers across the state. Part of TACA's mission is to help families navigate the system more effectively, so a year ago Ackerman called a meeting with the RCOC because she had been hearing a growing number of complaints about the agency's services.

In the meeting with the RCOC's chief executive officer Bill Bowman and its chief operating officer Janis B. White., Ackerman outlined a list of six issues, top three complaints, and six areas of need that TACA families felt the agency needed to improve upon.

Two of the primary issues were complaints that the RCOC stops programs and funding at age three for many children with autism; and that families must wait too long for funding of services and placement in therapy for children who are newly diagnosed with autism. (When a child turns three, regional centers evaluate the child to determine whether they qualify for services based on requirements defined in the state's Lanterman Act.)

A year later, Ackerman says most of the issues on her list haven't been addressed. TACA families say they wait between two months to 18 months for therapy services to start, and Ackerman said that it's rare for one of her families to have services start within weeks, even though research has shown it's crucial to start intervention early.

The RCOC is responsible for contracting the agencies (known as vendors) that provide services such as behavior therapy, but Ackerman says these vendors have long waiting lists that contribute to the delays.

"The calls we're getting is 'No one can help my kid," says Ackerman, whose son is autistic. "Keep in mind that the numbers (of autistic children) keep increasing. Even though the regional center may say 'We have more vendors," when they started this process two years ago the number of children with autism was one in 250, compared to one in 150 children today. They should be moving a lot faster."

In an interview Bowman said that about a year ago the RCOC launched an initiative to increase the amount of behavioral resources, in part due to the meeting with Ackerman.

"We've really been aggressively recruiting new behavioral vendors. Our target has been new behavioral vendors and reducing the time that families spend (waiting)," says Bowman. "Our data says that families are getting services faster today than they were getting it a year ago."

As for children whom the RCOC determines are no longer eligible for services after the age of three, Bowman said he encourages families to come back because the door is never closed. In many cases, autistic children do improve and no longer need services, he said.

"You want to say praise the lord my kids are OK, and you want to share that with those families. You want to say, your kids are alright, your kids have passed," said Bowman. "Instead what the families do is say, 'No, my kid is not eligible? What do you mean my kid is not eligible?'"

Ackerman, however, said the RCOC tells parents they are closing their child's file, even though the child continues to have behavioral problems at home.

"We hear that all the time: The regional center told me my son no longer qualifies. What do I do,'" said Ackerman. "The system is broken. The parties need to get together at this point and come up with a resolution based on budgetary issues, based on what's happening with the population because we're in the middle of an epidemic."

Adams and Ackerman continue to wait for these issues to be addressed. For the children who desperately need these services, however, time is the one thing for which they can't afford to wait.

Article B Celebrity Autism Group in Civil War (More on Autism Speaks)

FOXNEWS.COM HOME>ENTERTAINMENT

Thursday, June 07, 2007

By Roger Friedman

Autism Speaks, the celebrity group founded by former NBC chairman Bob Wright and his wife Suzanne, is in the middle of a family feud and a dispute over whether they have swiped an award-winning film from its director.

The charity is unusual because in a short time it has raised millions of dollars and called upon such celebrity friends of the Wrights like Jerry Seinfeld and Paul Simon.

The Wrights created Autism Speaks just three years ago when their grandson, Christian, was diagnosed with the malady. But since then they have had such a severe falling out with their daughter Katie, Christian's mother, that the Internet is now buzzing with a new scandal.

This week, the Wrights posted a press release on the Autism Speaks Web site in effect disowning daughter Katie's comments in a video interview she gave to a critic of Autism Speaks. Katie Wright also appeared on the "Oprah" show in April, where she talked about the split in philosophies with her parents.

Even the press release issued by the Wrights itself caused a buzz because it initially read: "Katie Wright is not a spokesperson for Autism Speaks. Our daughter's personal views differ from ours and do not represent or reflect the ongoing mission of Autism Speaks. ... Her appearance with David Kirby was done without the knowledge or consent of Autism Speaks." Ouch!

Only later, when the statement seemed too harsh, the Wrights changed the release, adding of Katie: "She is our daughter and we love her very much."

But the damage was done.

With the scandal quickly overtaking the cure of autism as a subject, comes a new dilemma. Filmmaker Lauren Thierry is accusing the Wrights of appropriating her award-winning film "Autism Every Day" for their own purposes. Thierry made the film, which was shown at Sundance this year and is in this month's Nantucket Film Festival, after the Wrights saw an earlier, shorter version they liked.

Thierry says Suzanne Wright then commissioned a feature version, and told her "money is no object." While the Wrights paid all the film's costs, they never came to terms with Thierry, the director says. They systematically cut her out of the promotion of the film, she says, when the Wrights took it on the media rounds.

This was odd considering Thierry and husband Jim Watkins, an anchorman for Channel 11 in New York, have a good PR hook of their own: They are parents of an autistic son.

Thierry wants to be paid for making "Autism Every Day," but when the Wrights sent her a contract, with a blank space for the fee, it also included a proviso that Thierry could not do any publicity for it. Thierry countered by sending a bill for $104,000 including $64,000 for labor and $40,000 for intellectual property. For that amount she was willing to allow the Wrights buy her out. Ironically, Thierry had already told the Wrights she would be splitting her fee with an autism school in New York.

The Wrights countered, through their executive, Alison Singer, that Thierry was paid $30,000 and that they have compensated her in full. But Singer can't produce any evidence of this.

"Alison Singer sent me a check for $30,000. I never cashed it and sent it back. There was never an agreement for a fee," Thierry said.

Singer, who at first told me about paying Thierry, is now playing her cards close to the vest.

"Autism Speaks feels it inappropriate to publicly disclose its details," Singer said.

The chaos surrounding Autism Speaks is not surprising. In short order the new group has shut down or subsumed a number of other, older organizations that used to do the same work, but without the resources of the Wrights. Sources at the long standing Nordoff-Robbins Foundation, for example, have complained recently that their fundraising sources have dried up since Autism Speaks came on the scene.

In her video interview, Katie Wright criticizes not only Autism Speaks but also a group they took over, the National Alliance for Autism Research, for which has organized marches and vigils for 20 years. Katie Wright now believes that vaccinations and the environment may be responsible for autism — a controversial theory among others who say it is a genetic disorder.

Whichever side turns out to be correct, the split in the Wright family cannot be good for the cause of autism.

"The whole reason for Autism Speaks was because of Christian," one critic said. "And now the Wrights are dissing his mother, their own daughter."

Singer says none of that is true.

"The Wrights started Autism Speaks for all families, not just their own," she said.

She agreed, however, that the couple would not have known about autism at all had their own family not become involved in it.

Meanwhile, Thierry says she remains unpaid and that, despite the Wrights' assertions, she is paying her own expenses. When she goes to the Nantucket Film Festival later this month, it's the festival that's picking up her travel and accommodation expenses.

http://www.foxnews.com/story/0,2933,278814,00.html
 
6 Vaccine News
Article A Omnibus Hearings: Two Articles & More Information

Children With Autism Get Day In Court
Thousands Claiming Vaccine-Autism Link Get Their Day In Court

WASHINGTON, Jun. 11, 2007


(AP) The parents of 12-year-old Michelle Cedillo asked a federal court Monday to find that their child's autism was caused by common childhood vaccines, a precedent-setting case that could pave the way for thousands of autistic children to receive compensation from a government fund set up to help people injured by the shots.

Wearing noise-canceling headphones, Michelle, of Yuma, Ariz., was brought into the courtroom in a wheelchair at the start of the proceedings before the U.S. Court of Federal Claims. She stayed only a short time.

Her parents, Theresa and Michael Cedillo, allege a preservative called thimerosal that had been used in vaccines weakened their daughter's immune system and prevented her body from clearing the measles virus after she was immunized for the disease at age 15 months.

Today, Michelle suffers from a litany of health problems, including severe autism, inflammatory bowel disease, glaucoma and epilepsy.

"We hope to find out what happened and hopefully get the help she needs," said Theresa Cedillo, who takes care of her daughter full time at home.

Special Master George Hastings Jr. thanked the family for allowing theirs to be the first of nine test cases that will help guide the resolution of some of the nearly 5,000 similar claims lodged with the government.

"Clearly the story of Michelle's life is a tragic one," Hastings said in pledging to listen carefully to the evidence presented during the three-week hearing.

The burden of proof is easier than in a traditional court. Plaintiffs only have to prove that a link between autism and the shots is more likely than not, based on a preponderance of evidence.

Large scientific studies have found no association between autism and vaccines containing thimerosal.

But many parents say their children's symptoms did not show up until after their children received the vaccines, required by many states for admission to school.

"These are families who followed the rules. These are families who brought children in for vaccines. These are families who immunized their children," said the Cedillos' attorney, Thomas Powers.

Powers said that the science regarding a possible vaccine-autism link is in dispute.

Government attorney Vincent Matanoski dismissed much of what the plaintiffs are expected to present as conjecture or speculation.

"You'll find their hypotheses untested or, when tested, have been found false," Matanoski said.

Since 1999, more than 4,800 families have filed claims with the government alleging their children developed autism as a result of routine vaccinations. Most contend that a preservative called thimerosal is to blame for the impaired social interaction typical of the disorder.

The court is being asked to decide whether there is a link between autism and childhood vaccines. If it finds one exists, the families could be eligible for compensation under the Vaccine Injury Compensation Fund, a program established by Congress to ensure an adequate supply of vaccines by safeguarding manufacturers from lawsuits. Under the program, people injured by vaccines receive compensation through a special trust fund.

Autism is characterized by impaired social interaction. Those affected often have trouble communicating, and they exhibit unusual or severely limited activities and interests. Classic symptoms of mercury poisoning include anxiety, fatigue and abnormal irritation, as well as cognitive and motor dysfunction.

Monday's case addresses the theory that the cause of autism is the measles, mumps and rubella vaccine in combination with other vaccines containing thimerosal. The preservative, about 50 percent mercury by weight, is no longer found in routine childhood vaccines but is used in some flu shots.

In July 1999, the U.S. government asked vaccine manufacturers to eliminate or reduce, as expeditiously as possible, the mercury content of the vaccines to avoid any possibility of infants who receive vaccines being exposed to more mercury than is recommended by federal guidelines.

___

On the Net:

U.S. Court of Federal Claims
Court to Focus on Vaccine-Autism Link

Jun 11, 7:47 AM (ET)

WASHINGTON (AP) - Thousands of families that allege vaccines caused their children's autism are preparing for their day in court, which could bring them vindication and compensation.

Since 1999, more than 4,800 families have filed claims with the government alleging their children contracted autism as a result of routine vaccinations. Most contend that a preservative called thimerosal is to blame for the impaired social interaction typical of the disorder.

If they <http://apnews.excite.com/article/20070611/D8PMJD400.html##> prevail in the courts, the families are entitled to compensation from a multibillion-dollar trust fund. Previously, large scientific studies have found no association between autism and vaccines containing thimerosal.

The first of what eventually could be nine test cases from those claims is the subject of the hearing opening Monday in the U.S. Court of Federal Claims. Three special masters appointed by the court will preside over the hearing, expected to last through June 29.

Monday's case addresses the theory that the cause of autism is the measles, mumps and rubella vaccine in combination with other vaccines containing thimerosal. The preservative, about 50 percent mercury by <http://apnews.excite.com/article/20070611/D8PMJD400.html##> weight, is no longer found in routine childhood vaccines but is used in some flu shots.

___

On the Net:

U.S. Court of Federal Claims
ABC NEWS - THE VACCINE – AUTISM LINK: FACTS & MYTHS

http://www.abcnews.go.com/Health/story?id=3266085&page=1

Four-year-old Jamie Handley at his home in Portland, Ore. Handley began showing symptoms of autism when he was 18 months old, just weeks after he received a flu shot containing thimerosol, a mercury-based preservative. Jamie's father, JB, founded Generation Rescue, an organization that supports the theory that autism is caused by exposure to mercury. The group has taken out full-page ads in The New York Times in support of this theory, but has also garnered many critics who believe there is no direct link between mercury exposure and autism. (Stephen Voss/WpN)

___

Washington court will hear autism-vaccine suits

Sun Jun 10, 2007 6:05PM EDT
By Maggie Fox, Health and Science Editor

WASHINGTON (Reuters) - A special court that will pit scientists against activists in the debate over whether vaccines have caused autism in many children begins hearings on Monday with the first test case, involving a 12-year-old Arizona girl.

Although science has weighed in heavily on the question -- with strong evidence that vaccines are not linked to the disease -- a very vocal group of people remains unconvinced.

More than 4,800 cases are pending, filed by parents who believe their children have autism that was caused by vaccines. The little-known U.S. Court of Federal Claims has set up an omnibus hearing in Washington, D.C., with the first case expected to last three weeks.

The parents are seeking payment under the National Vaccine Injury Compensation Program, a no-fault system that has a $2.5 billion fund built up from a 75-cent-per-dose tax on vaccines.

"Monday will mark the first time ever that evidence of autistic harm from childhood vaccines is examined and cross-examined in a court of law," activist David Kirby, who wrote a book about the purported vaccine and autism link, said in a statement.

No judges but instead three "special masters" will hear the test cases. They are Denise Vowell, a former U.S. Army chief trial judge; Patricia Campbell-Smith, a former environmental lawyer and clerk at the Federal Claims Court; and George Hastings a former tax claims expert at the Department of Justice.

The first test case will ask whether a combination vaccine for measles, mumps and rubella, or MMR, plus a mercury-containing preservative called thimerosal, caused the autism of Michelle Cedillo, now 12.

"The profound downward change in Michelle's health began seven days following the MMR," the Legal Times newspaper quoted Michelle's mother Theresa Cedillo as saying.

TRAUMATIC SHOTS

Vaccine experts say parents often link vaccines with their children's symptoms because getting a shot can be upsetting, and children are vaccinated at an age when autism and related disorders are often first diagnosed.

They point to two Institute of Medicine reports, in 2001 and 2004, that reviewed the evidence and determined there was no link between vaccines and autism.

"From my standpoint, this question has been asked and answered," Dr. Paul Offitt of the Philadelphia Children's Hospital, who helped invent a rotavirus vaccine, told reporters in a telephone briefing.

"You know, it's a scientific question. It's best answered in a scientific venue. It's been done. I mean, the court is not a place to determine scientific truths. The court is a place to settle disputes."

Dr. Peter Hotez of the Sabin Vaccine Institute said he is confident his daughter's autism was not caused by any vaccines.

"Even if we could turn back the clock and do it all over again, I can honestly say that we would still give Rachel her full complement of pediatric vaccines and our confidence in this is based on what we know about autism," Hotez told reporters in the same briefing.

Offitt and Hotez say many studies show that children who have been vaccinated are no more likely to develop autism than children who have not been vaccinated. And they note that although thimerosal was removed from all childhood vaccines in the United States, except flu vaccines, by 2002, rates of autism have continued to climb.

The U.S. Centers for Disease Control and Prevention estimates that about one in every 150 children has autism or a related disorder such as Asperger's syndrome.

The CDC estimates that about 560,000 people up to age 21 in the United States have autism, which can severely disable a child by interfering with speech and behavior.

Want more information about the hearings?

Daily audio and transcripts

General information

To access the audio conference portion:
• US/Canadian participants dial: (888-638-9716)
• Please tell the operator you are calling to join the autism hearing.

Article B See You in (Vaccine) Court

See You In (Vaccine) Court 

By David Kirby

www.huffingtonpost.com/david-kirby/see-you-in-vaccine-cour_b_51224.html

On Monday, one of the most important legal proceedings in American medical history will get underway at the U.S. Court of Federal Claims in Washington. There, a special panel of three judges will begin hearing evidence to support -- and refute -- the hypothesis that mercury in vaccines and/or the live-virus measles-mumps-rubella shot caused autism or autism-like symptoms in some American children.

Monday will mark the first time ever that evidence of autistic harm from childhood vaccines is examined and cross-examined in a court of law. This is far from a slam dunk case for either side, and the stakes - professional, financial, emotional -- could not be more intense.

These three judges from the federal "Vaccine Court," as it is called, are about to dip into the raging, contradictory waters of the vaccine-autism contretemps, knowing they must emerge on the other side, each with their own acutely anticipated decision about causation. Ultimately, they must deliver judgment on some 4,800 claims that have been languishing in the system for years.

I do not envy them their task.

Technically, at least, this is not a trial at all; it is an "Autism Omnibus Proceeding" in a no-fault, supposedly non-adversarial adjudication. The judges are not judges, but "Special Masters;" plaintiff families and their lawyers are called "petitioners," and the defendant, called the "respondent," is not some drug giant, but the Department of Health and Human Services, represented by well-funded attorneys at the US Justice Department.

Any claims awarded in Vaccine Court are paid from a 75-cents-per-vaccine tax footed by consumers, leaving vaccine makers free from liability.

But if even one case of causation is determined, then private lawsuits in civil courts -- where the drug makers themselves are on trial -- would soon flood the dockets. (Ironically, if families lose in Vaccine Court, they are free to sue in civil court. Having autistic kids appear before sympathetic juries is Big Pharma's big nightmare, and it's why a secret rider was attached to the Homeland Security Act of 2002 to bar thimerosal cases from civil court and force them into Vaccine Court).

Over the next three weeks, evidence on both sides of the first "test case" will be picked apart to its bare bones, with one gaping exception. Petitioners were just denied access to the government's vast vaccine safety database of HMO patients, which was used by CDC officials to conduct a four-year study that ultimately found no link between thimerosal and autism. Earlier versions of the study, obtained through the Freedom of Information Act, however, clearly showed increased risks for many neurodevelopmental disorders, depending on the dose of thimerosal administered.

No wonder a special panel convened by the NIH recently issued a harsh critique of the CDC's data collection and management, saying the study contained "several serious problems... weaknesses and limitations" that "reduce its usefulness" in proving or disproving causation.

And so, numbers culled from the government's massive database will be submitted as Exhibit A for the defense, though the other side will be forever barred from seeing the actual raw data, in order to replicate what the CDC researchers found. (Exact replication is impossible because original datasets, culled at taxpayer expense, somehow "went missing" and are no longer available for re-analysis - a possible felony violation of the federal Data Quality Act).

On the other hand, the burden of proof for plaintiffs is lower in Vaccine Court than other federal courts, which could even things out a little.

Nearly all of the government's evidence will be "epidemiological" in nature -- based on large population studies of computerized data. These include the CDC study, plus similar research done in Sweden, Denmark and the UK which found that, if anything, thimerosal had a "neuro-protective" effect on children by apparently reducing their risk of autism.

Petitioning attorneys will counter that Federal Court rules regard epidemiology alone as being "insufficient" to disprove causation, and will surely use the NIH panel's critique of the government's own database as a roadmap toward defanging the CDC's conclusions. To begin with, the CDC found an autism rate of just 11-per-10,000 children at the largest participating HMO, where the actual rate is currently 73-per-10,000. Why so many excluded children, they will likely ask, and how did this affect the rate of outcomes?

As for Denmark, petitioning lawyers will argue that autism case numbers increased after 1992, when thimerosal was removed from childhood vaccines, mostly because the Danish government happened to switch from counting inpatient-diagnosed cases only -- about 13% of the total -- to counting all inpatient AND outpatient cases nationwide. By 1999 the total number had "gone up" to about 200 children a year, in a nation of 6.2 million people -- well below the current US rate of 1-in-150 kids, and not exactly a raging epidemic.

The lawyers might also point out that incidence and prevalence rates of autism actually declined in Denmark during 2000, and again (we now know, only through FOIA) in 2001. And they could cite a media quote from Dr. Irva Hertz-Picciotto, professor of public health at UC-Davis School of Medicine and chair of the NIH panel that critiqued the CDC study. Flawed as the CDC analysis was, she called it "an improvement on other studies, including the two in Denmark, both of which had serious weaknesses in their designs."

For their side of the argument, family lawyers will present thousands of pages of published "biological" science, as opposed to epidemiology. They will examine data from animal models, test tube studies, and examinations of children with autism; they will try to present a plausible biological mechanism by which mercury (and to a lesser extent, MMR) could cause autistic-like symptoms -- at the molecular, cellular, and clinical level.

Among this evidence is research suggesting that:

1) Many children with autism, probably due to genetics, are deficient in certain sulfur-based proteins that defend against heavy metal accumulation in humans. The proteins, which include glutathione, are called "thiols," and sometimes "mercaptans," from the Latin mercurium captans, or literally "mercury capturers."

2) Many children with autism show signs of heavy metal accumulation, including elevated levels of proteins called "prophyrins" a bio-marker of lead and mercury toxicity. They also present with low levels of mercury in baby haircuts, (versus control children) suggesting a heavy metal "efflux disorder" that prevents the proper metabolism and excretion of heavy metals.

3) Exposure to extremely low doses (micromolars) of thimerosal, previously thought to be safe, shut down 25% of brain stem cells, in one lab study.

4) In another, low-level exposures of a few minutes duration killed many of the immune system's "dendritic" cells, disrupted production of immune-system messenger chemicals called "cytokines," and caused inflammation.

5) Meanwhile, many children with autism show signs of immune deficiency AND hyperactivity, as well as cytokine imbalances and inflammation, (they also show signs of chronic autoimmunity, where the immune system attacks the body and brain).

6) Organic ethylmercury from thimerosal crosses the blood-brain barrier in primates, where it quickly converts to inorganic mercury, which can remain trapped in the brain for decades.

7) Inorganic mercury trapped in primate brains caused neuro-inflammation (ie, rapid brain growth) by activating "glial" cells in the brain.

8) Autopsies on autistic human brains found chronic inflammation, apparently linked to the brain's immune system and produced by activation of its "glial" cells.

9) Another autopsy study also showed ongoing neuro-inflammation, possibly from heavy metal exposure, and signs of autoimmunity. (Other studies have found rapid brain growth in infants with autism.)

10) Thimerosal can disrupt a chemical process called "methylation," critical for gene expression, neural function, memory and attention, and the production of sulfur-based "thiol" proteins like glutathione.

Plaintiff lawyers will also show data from a study of birthday videos proving that many kids with autism were meeting or exceeding developmental milestones at age one, only to have tumbled into a wordless, autistic world by age two. They will also show home videos of plaintiff children, before and after their own regression, and in many cases, of the same children a few years after experimental treatments -- including chelation (for heavy metal removal) and methyl B-12 (for repair of methylation) -- that seem to have vastly improved their condition.

At this point, government lawyers will surely try to discredit these biological studies, one-by-one. They could succeed, though it will be tough, given the data's provenance. Lead authors come from institutions such as Harvard, Northeastern, Columbia, UC Davis, Johns Hopkins, and the Universities of Washington, Arkansas, Kentucky and Rochester, and their papers were published in peer-reviewed journals such as Molecular Psychiatry, and the NIH's Environmental Health Perspectives.

The defense also has a few biological studies to support its side, including one showing no difference in the mercury levels of blood and hair of typical vs. autistic kids. But the mean age in this study was four years old, and mercury does not linger around in blood or hair for that long.

Another study showed the thimerosal containing drug Rho-Gam (given to pregnant women, and not a vaccine) did not increase the risk of autism in children, though this study was funded by Johnson & Johnson, the product's manufacturer and a potential thimerosal litigation defendant.

Likewise, the plaintiffs might offer some epidemiology, including one study from the University of Texas showing increased rates of autism in school districts near mercury-emitting coal power plants, and another, funded by the CDC itself, where children with autism in the SF Bay Area were 50% more likely to be born in the region's most mercury-polluted tracts, suggesting "a potential association between autism and estimated metal concentrations."

Finally, expect to hear hours of testimony about California. Mercury was phased out of childhood vaccines (except the flu shot) a few years ago, the argument goes, so there should have been a drop in autism rates by now, especially in California, which keeps the most reliable autism statistics. It's a very powerful contention, but it may be too early to make any final conclusions.

Among the youngest children, 3-to-5-year-olds, the number of cases was still increasing after the first quarter of 2007. These kids were born and vaccinated between 2002 and 2004, after thimerosal was removed from vaccines, right?

It's true, most companies started making preservative-free vaccine in 2001, but they also continued making product with thimerosal, as a backup during the transition period. Little, if any of those mercury-containing vaccines were ever recalled: They remained on the market, until they were finally used up or expired, in 2003.

Government lawyers will likely point to a 2002 survey of vaccine providers, conducted by the CDC, showing that just 2% of the pediatric shots contained thimerosal. But this was a survey of providers under CDC contract only, and CDC had a record of buying mercury-free vaccines for its clients (ie, state, county and other public health clinics) even before 1999, when the federal government called for the removal of thimerosal from the pediatric schedule "as soon as possible."

It's not clear how many of the CDC contract providers surveyed were in California, where the vast majority of children receive care in private practices and large HMOs. Moreover, the CDC survey was merely a "convenience sample," which are so inaccurate in representing the general population they are virtually never used in published data. In fact, the US DOJ itself defines them as "rarely useful in evaluation and usually hazardous."

Meanwhile, the state has quietly been tracking the number of autism cases by birth year, as well as age group, meaning we can look at the very youngest children entering the system. In the first quarter of 2003, there were 170 children with autism in the state system born in 2000 (or, roughly, three-year-olds). In the first quarter of 2004, the number of three-year-olds increased 8.2% to 184. In 2005 the same number went up 13%, to 208, and in 2006 it jumped nearly 27% to 264. But this year, among kids born in 2004, it was 251, a 5% drop.

This could be attributable to some quarterly reporting glitch, and the caseload could easily be made up in the next quarter (that data will be out in mid-July). But if the deficit continues, the 2004 birth cohort could finish out as the first in which case numbers actually fell. (A similar trend might be emerging at Northern California Kaiser, a major HMO).

Of course, it would take tremendous resources to get to the bottom of this, lawyers might argue. One would need full medical records on each of those 251 kids born in 2004. Did any receive thimerosal still left in California vaccines (or prenatally via Rho-Gam)? How many were exposed to mercury in flu shots during pregnancy and as infants? And in a population that is now one-quarter foreign born, how many children immigrated from countries where immunization with thimerosal is now routine? (Vaccination coverage in Mexico is now 92%).

Is immigration helping keep the California numbers up? We don't have that data. But we do know that, since 2003, the rate of increase among white and black children was 48.6% and 51.6%, respectively. Among Asian children, however, it was 79%, and among Hispanics, 84.2%. Probably something worth looking into (as well as the effect of aggressive early intervention campaigns, which have consistently brought down the average age of diagnosis and would likely drive up the number of three year olds in the system).

But again, this is epidemiology coming out of California, and the Special Masters are looking at specific children with specific claims before their court. Officials from the state have been warning all of us (and that includes me) not to read too much into these numbers.

At the International Meeting For Autism Research last month, California health officials presented their data along with this caveat: "Limitations of the database and lack of individual exposure data prevent conclusions, based on these data, about thimerosal as a cause or modifier of autism in a specific subgroup or child."

It is entirely possible that thimerosal itself did not cause the autism epidemic, but that is not what is on trial here. Even so, for the sake of argument, let's say that a "specific subgroup" of people with autism, maybe 1%, was affected by mercury in their vaccines. With an estimated 1.5 million Americans with autism, that would mean 15,000 people severely impacted by thimerosal.

But, if causation can be shown in even 1% of cases, this would provide tremendous hope for the other 99%. Yes, some cases may be purely genetic in nature. But for everyone else, if we can show how thimerosal caused "autism," we might be able to do the same for, say, pesticides, PCBs, flame retardants, jet fuel, environmental mercury in air, water and fish, or any combination thereof.

It's a tough call and, like I said, I don't envy these Special Masters, though I do thank them for opening the proceedings to the public.

And I will see you in Vaccine Court.

David Kirby is author of the book "Evidence of Harm." Many of the studies cited here can be found on his Powerpoint slides at www.evidenceofharm.com
 
7 TACA Frequently Valued Information – NEW

A new feature for the TACA eNews for families – Frequently Valued Information (FVI) The goal of FVI is to provide updates and “need to knows” quickly to make your life easier!

This month’s FVI edition: TACA SPECIAL EVENTS – HOW TO REGISTER?
Most of what TACA provides each year in our over 100 meetings is free to families. Occasionally we offer “fee-based” seminars that may be of interest to TACA members. These seminars have a fee due to extra costs for speakers and or materials.

Sign up for a gluten free/casein free cooking class at the California Integrative Hyperbaric center in Irvine on June 27, 2007. Register Online

Special note: Since TACA’s inception – we have offered scholarship seats for families in need. Please contact Moira Giammatteo for details.

 
8 Upcoming TACA Activities
Just for FUN – once a month

Come join your TACA friends at PUMP IT UP in Huntington Beach, Lake Forest and newly added Rancho Cucamonga and Sorrento Valley for some good ol’ family fun! See schedule

 
9 Vendor Announcements
California Integrative Hyperbaric Center “Family Support Night” Group Meetings (Newly Added!)
Date: Meets the last Wednesday of each month
Time: 7-9 p.m.
Location: California Integrative Hyperbaric Center, 16251 Laguna Canyon Road Suite 175, Irvine CA 92618, 949-428-8878
Get directions from your location.
Information: Contact Julie Landon
Child care: Not offered at this time, sorry
VIDEO LINKS

There is a really valuable resource of videos to watch on topics by a DAN! doctor. I recommend you take a look by topic where you need help.

Here is the note from the doc:

Check out our new website, including a Video Dictionary of interviews, instructional videos, etc. This website will become an expanding catalogue of articles and videos relating to autism and other health information.

Kurt N. Woeller, D.O.
 
10. Books and Web Sites
TACA’s Autism Journey Guide is now available to folks outside California!  This almost 300-page guide provides valuable insight to families on the autism journey!  Now three options for buying:
 
11. TACA Volunteer Opportunities

TACA has grown so much over the past six years and our amazing volunteers help make TACA do what it does for families. Currently over 100 volunteers allow TACA to run and serve the almost 2300 families. Volunteer hours are crucial to our operations and so needed and appreciated.

It is our goal to make volunteer positions available to those in our community (family, friends, vendors, and sometimes our parents) as times permits in our busy schedules!

Please consider this options:
- TACA 4th annual Family Picnic on September 30, 2007 in Irvine will need over 75 volunteers. We are looking for NON-TACA members to volunteer their time so our TACA MEMBERS can have a wonderful family day. Please contact Elizabeth to express your interest.

Thank you for considering a volunteer position at TACA.

 
12. Conferences, Seminars & Workshops
A. Prescription for School Success with Dr. Geeta Grover

In this presentation, Dr. Grover will engage audience participation to discuss the ways in which mental health professionals can interface with school districts to help students with behavior, attention, and learning problems succeed in school, both academically and socially. This event will function as an open question and answer session.

Dr. Geeta Grover is a Developmental and Behavioral Pediatrician. Her practice specializes in the evaluation and management of children and adolescents with ADHD, Learning Disabilities and other school related concerns. Dr. Grover has a private practice in Laguna Niguel as well as being the Medical Director of Developmental and Behavioral Pediatrics at CHOC. She is the co-director of CHOCO's Reading Club (a pediatric early literacy program based in the general pediatric outpatient clinics at CHOC) and coordinator of the rotation in Developmental and Behavioral Pediatrics for the CHOC Pediatric Residency Program. Dr. Grover attended medical school at the University of California, Irvine College of Medicine. She completed her internship, residency and fellowship in Ambulatory Pediatrics at Harbor/UCLA Medical Center in Torrance. She is board certified in Pediatrics and Developmental-Behavioral Pediatrics.

Wednesday, June 13, 2007
7:00pm – 9:00pm
UCI Child Development Center School Trailer
19262 Jamboree Road, Irvine 92612
(between Birch and Fairchild, across the street from Starbucks)
(949) 824 – ADHD (2343)

CHADD is a parent support group that provides a forum for continuing education for parents and professionals interested in learning more about ADD and ADHD in children and adults, CHADD also helps assure that children are provided with the best educational experiences and resources available for their needs. For more information on CHADD, please call Barbara Henry at (714) 630-5214 or visit our website at www.chadd.org

B. Adaptive Recreation Programs for Kids and Adults

Foothill Autism Alliance Family Resource Meeting, Adaptive Recreation Programs for Kids and Adults -- fun and exercise for all ages and abilities!  Come hear speakers from local Parks & Rec, Special Olympics, Rose Bowl aquatics program, and the YMCA's "Y-Spirit" program.  818-662-8847

June 13 Pasadena 7-9:30 p.m. - free!

PCDA, 620 North Lake Ave. 2nd floor (just north of the 210 fwy)
Twyla Ramos www.foothillautism.org info@foothillautism.org

C. Lyme-Autism Connection Conference

Learn about how Lyme disease could be the infection which is hindering your child’s recovery from autism. Dr. Charles Ray Jones, Lee Cowden, M.D., Robert Bransfield, M.D., Doris Rapp, M.D., Mady Hornig, Anju Usman, M.D. & many more fabulous speakers.

June 22-24 Irvine $175 for the two-day conference plus pre-conference homeopathy workshop on Friday night. Hyatt Regency Hotel - Tami Duncan www.liafoundation.org Tamiduncan@aol.com

D. Special Education Law and Advocacy Training

Wrightslaw special education law and advocacy programs are designed to meet the needs of parents, advocates, educators, attorneys, and health care providers who represent children with disabilities.

July 5-6 Los Angeles - Special Education Law and Advocacy Training sponsored by Klinefelter Syndrome and Associates. Wayne Steedman and Pat Howey

E. Dreams at Work: Nat'l Conference on Childhood Apraxia of Speech

July 12 - 14, 2007 Anaheim

Registration is now open for the "Dreams at Work: The 2007 National Conference on Childhood Apraxia of Speech. Proceed to the Conference Information Page in order to download a brochure and register by US mail or to register online.

Also, we are pleased to announce that the law firm of Morrison and Foerster has provided a grant to fund a limited number of partial parent scholarships to the summer conference. Review application information and requirements.

Please contact us if you have any questions. Send an email to Kathy Bauer at kathyb@apraxia-kids.org

F. Best Practices in Education for Asperger’s Disorder

THE HELP GROUP - UCLA SEMEL INSTITUTE

ON ASPERGER’ S DISORDER: SUMMER 2007

Best Practices in Education

An intensive three-day, interactive workshop for educators and clinicians on best practices in educating children and adolescents with Asperger’s Disorder.

Wednesday July 18th - Friday July 20th

The Help Group Sherman Oaks Campus, Sherman Oaks, California

 

THE INSTITUTE IS DESIGNED FOR

  • Regular Education Teachers
  • Psychologists
  • Educational Therapists
  • Occupational Therapists
  • Counselors
  • Inclusion Specialists
  • Special Education Teachers
  • School Administrators
  • Speech & Language Pathologists
G. Cutting Edge Treatment in Autism, Important New Discoveries Relevant to Autism Recovery

Conference - Cutting Edge Treatment in Autism, Important New Discoveries Relevant to Autism Recovery

July 21 Riverside 8am-6pm $99 per person $169 per couple

Riverside Convention Center 3443 Orange Street - Bryan Olson www.greatplainslaboratory.com bolson@gpl4u.com 913-341-8949

H. Rapid Prompting Method Instructional Sessions

Soma's RPM Workshop - Soma Mukhopadhyay will conduct 1:1 Rapid Prompting Method instructional sessions with local students. 512-465-9595

August 9-11 Irvine - HALO information@halo-soma.org

I.
Pasadena Back-to-School Autism/Asperger's Conference
Michelle Garcia Winner - Social Thinking
Teresa Cardon – Enhancing Communication
Rick Clemens - Social Play
Sue Golubock – Sensory Integration
James Adams - Biomedical Treatments
& many other top speakers, with over 30 presentations to choose from

August 18-19 Pasadena $160 for both days for parents (early registration only)
Pasadena City College, 1570 E. Colorado Blvd
Marie www.autism-conferences.com autismconferences@gmail.com 562-804-5516

 
Personal Note

It’s a historic time – starting this week the Omnibus US Court of Federal Claims in Washington DC will have three judges begin an in-depth look at the evidence of the connection between autism and vaccines. This look will not just cover thimerosal but also multiple viruses including the MMR (Measles, Mumps, & Rubella vaccine and others.)

This TACA eNews outlines important information for families to review the available information and process that will occur. It is highly recommended to review the information and I will do my best to continue providing updates.

Your friend on the journey,

Lisa A, Jeff & Lauren’s mom, Glen’s wife

And Editor: Kim Palmer (thanks Kim!)

 
 
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.

P.S. TACA e-news is now sent to 3,236 people! • Number of TACA families we serve: almost 2,300

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