________________________________________________________________
Wednesday,
January 7, 2021
Vol. 13 No. 3
RESEARCH
Top Federal Autism Panel Votes For Millions in Vaccine Research
TREATMENT
New Drug Shows Promise for Treatment of Adults with Fragile X Syndrome
EDUCATION
Autistic Boy's Parents: Protect Students Better
PUBLIC HEALTH
Obama Wants Journalist Gupta for Surgeon General
PEOPLE
Driver Rescues Students From Burning Bus
Jett Travolta's Cause of Death Leaked To Public
VOLUNTEERS
Illinois Woman's Homemade Pins Made Impact On Autism Research
Volunteers Needed To Train Autism Service Dogs
COMMENTARY
Leave the Travoltas Alone
What is Paul Offit's Problem?
RESEARCH
Top Federal Autism Panel Votes For Millions
in Vaccine Research
By David Kirby on The Huffington Post.
tiny.pl/6zh6
The Inter-Agency Autism Coordinating Committee (IACC) has voted to recommend earmarking millions of dollars in research funds from the Combating Autism Act of 2006 to study the possible role of vaccines in the causation of autism.
The panel also proposed spending an additional $75 million to study a wide variety of other environmental factors in autism, possibly including parental age, infections, heavy metals, neurotoxins, occupational exposures and "other biological agents."
The decision, made last month, received little or no attention in the media. The vaccine research provisions are now included in the official IACC Draft Strategic Plan for Autism Spectrum Research.
The IACC has 12 members from various health-related branches of the Federal Government, plus six "Public Members," including representatives from Autism Speaks, the Autism Society of America and the Coalition for Safe Minds, as well as Stephen Shore, an adult on the autism spectrum.
Section III of the Strategic Plan is titled, "WHAT CAUSED THIS TO HAPPEN AND CAN THIS BE PREVENTED?" The section is divided into various parts, including short- and long-term research objectives. Much of the section is devoted to studying the interactions of genetic susceptibilities with potential environmental triggers, including vaccines.
In fact, two vaccine-autism studies have been approved by the IACC, which has proposed spending $16 million to: 1) "Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000
2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. Proposed costs: $10,000,000 Additionally, under "Research Opportunities," the panel also endorsed this objective: "Monitor the scientific literature regarding possible associations of vaccines and other environmental factors (e.g., ultrasound, pesticides, pollutants) with ASD to identify emerging opportunities for research and indicated studies."
For proponents of vaccine-autism research, this is a resounding victory. It covers much of what these advocates have been supporting for a number of years. It is also sure to enrage those who are opposed to such research.
But for now, it has been recommended that the US Federal Government spend millions of dollars to study not just thimerosal, (a mercury based vaccine preservative), not just the triple live virus MMR vaccine, but vaccines in general, all ingredients that go into vaccines and, most surprisingly, the effect of "multiple vaccine administration" in the causation of autism.
This document also marks the closest we have come, perhaps, to conducting a study of health outcomes among vaccinated vs. unvaccinated children in the United States. With a price tag of $10 million just to study its feasibility and to design a study, such a project would indeed be costly and cumbersome. But, as CDC Director Dr. Julie Gerberding has said, this is a study that "should and could be done." (There is a bill pending in Congress right now that would provide funding for a vaccinated-unvaccinated study).
But vaccines, of course, are not the only candidates for study in the etiology of autism. There is a growing consensus now that most autism cases arise from an unknown combination of environmental agents, probably interacting with certain genetic predispositions.
+ Read more: tiny.pl/6zh6
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• • •
TREATMENT
New Drug Shows Promise for Treatment of Adults with Fragile X Syndrome
tiny.pl/6znv
HealthNewsDigest.com — A study by researchers at Rush University Medical Center, Chicago, and the UC Davis M.I.N.D. Institute has found that an oral drug therapy, called fenobam, shows promising results and could be an effective new treatment for adults with fragile X syndrome.
“Currently there are no therapies on the market to treat cognitive deficits associated with fragile X syndrome,” said lead study author Elizabeth Berry-Kravis. “This pilot study has identified the potential beneficial clinical effects of fenobam, but further study is needed."
Berry-Kravis, a pediatric neurologist at Rush, said that some study subjects given fenobam showed calmed behavior and rapid reduction in hyperactivity and anxiety — effects that are similar to the drug’s action in earlier studies involving mice.
The findings of the open-label, single-dose study were published online today in the Journal of Medical Genetics.
Fragile X syndrome is the most common inherited cause of intellectual disability, whose effects range from learning disabilities to more severe intellectual disabilities like mental retardation. Fragile X syndrome is also the most commonly known cause of autism or “autistic-like” behaviors. Fragile X syndrome affects one person in 3,000 worldwide.
“All children with autism or intellectual disability should be tested for the fragile X mutation," said study senior investigator Randi Hagerman, a developmental and behavioral pediatrician and the UC Davis M.I.N.D. Institute's medical director. “This targeted treatment for fragile X syndrome may be helpful for a subgroup of children with autism, too."
The study is the first to assess the safety and pharmokintetic metabolism of a type of drug called an mGluR5 antagonist in humans with fragile X syndrome. The mGluR5 receptors (metabotropic glutamate subtype 5 receptors) perform a variety of functions in the central and peripheral nervous systems. For example, they are involved in learning, memory, anxiety and the perception of pain.
Fragile X syndrome and its associated disorders are the result of a mistake in the number of repeats of three nucleotides on the FMR1 gene on the X chromosome. A normal X chromosome generally has between five and 55 repeats of these nucleotides. Repeats above 200 result in fragile X syndrome. In the absence of the FMR1 gene’s protein product, FMRP, brain development is impaired.
Without FMRP, activation of cell pathways by mGluR5 goes unchecked. It has been theorized that this plays an important role in fragile X syndrome. To examine this hypothesis, earlier studies have used laboratory mice without an active FMR1 gene, but with a reduced amount of mGluR5 protein. The mice showed improvement in their brain structure and function, in their brains’ ability to make key proteins, and in memory and body growth. This shows that the over-activation of mGluR5 is important in fragile X syndrome, and suggested a path for drug development to treat it.
To test the theory in humans, 12 study participants recruited by Rush and the M.I.N.D. Institute received a single oral dose of fenobam. The study found that in six of the study participants there was a 20 percent improvement in sensory gating, attention and inhibition, through a protocol developed by David Hessl of the M.I.N.D. Institute and of the UC Davis Department of Psychiatry and Behavioral Medicine.
Other study authors include Sarah Coffey of the UC Davis M.I.N.D. Institute and the Department of Pediatrics at UC Davis Medical Center; Crystal Hervey, of the Department of Pediatrics at Rush Medical Center; Andrea Schneider of the UC Davis Department of Psychiatry and Behavioral Medicine and the UC Davis M.I.N.D. Institute; Jennifer Yuhas, of the Department of Psychiatry and Behavioral Sciences at UC Davis; Julie Hutchison and Michael Snape of Neuropharm Ltd.; Michael Tranfaglia of the FRAXA Research Foundation; Danh V. Nguyen of the Department of Public Health Sciences at UC Davis.
The study was funded by Neuropharm, LTD., the FRAXA Research Foundation, the National Institutes of Health (NIH), an Administration of Developmental Disabilities grant and the National Center for Research for Medical Research.
• • •
EDUCATION
Autistic Boy's Parents: Protect Students Better
By KOMO. tiny.pl/6znp
Seattle - A local couple is suing the Tukwila School District for $1.5 million, claiming the district didn't protect the couple's disabled son from bullies.
The school district admits 12-year-old John was bullied by his classmates at Showalter Middle School. His parents say the same boys continued tormenting him for a year until their son became suicidal.
"He was hit with books, he was spit on, and he was punched," said the boy's mother, Peggy. KOMO News has chosen not to use the full names of couple in order to respect their privacy.
The district says it reprimanded the bullies, but John's parents insist the abuse of the child didn't let up.
"Physical, emotional name-calling, degrading..."retard" would be the nicest thing that was said," said the boy's father, John.
The parents pulled their autistic son out of school and the district paid for him to attend a private school.
When John reached the tenth grade, the district wanted him to attend Foster High School, but he was afraid to go back to school with the students who had bullied him. The parents refused to send him there and the district took them to court for truancy.
Legal documents show psychological experts for the parents and the district both agreed that John wouldn't feel safe or thrive at Foster High.
As a result, his parents kept him at home for two years while battling the case in court. The district was ordered to pay for his education at another private school. John graduated, but his parents say he's not the same.
John suffers from post-traumatic stress disorder and his parents say he lives in fear. They're now suing the school district.
"I don't think they could have harmed this child more had they done it intentionally," said Yvonne Ward, the attorney for John's parents. "This is reckless indifference."
Jan Lande with the school district could not comment on the issue.
"This is a legal matter in the middle of litigation and something we can't discuss at this time," she said.
John's parents want damages to pay for counseling and vocational education. They also want to sent the district a clear message: protect the children better.
John's mother works as an instructional assistant for special needs children in the school district she is now suing.
• • •
PUBLIC HEALTH
Obama Wants Journalist Gupta
for Surgeon General
By Howard Kurtz, Washington Post, tiny.pl/6znn
President-elect Barack Obama has offered the job of surgeon general to Dr. Sanjay Gupta, the neurosurgeon and correspondent for CNN and CBS, according to two sources with knowledge of the situation.
Gupta has told administration officials that he wants the job, and the final vetting process is under way. He has asked for a few days to figure out the financial and logistical details of moving his family from Atlanta to Washington but is expected to accept the offer.
When reached for comment today, Gupta did not deny the account but declined to comment.
The offer followed a two-hour Chicago meeting in November with Obama, who said that Gupta could be the highest-profile surgeon general in history and would have an expanded role in providing health policy advice, the sources said. Gupta later spoke with Tom Daschle, Obama's White House health czar and nominee for Health and Human Services secretary, and other advisers to the president-elect.
The Michigan-born son of Indian and Pakistani parents, Gupta has always been drawn to health policy. He was a White House fellow in the late 1990s, writing speeches and crafting policy for Hillary Clinton. His appointment would give the administration a prominent official of Southwest Asian descent and a skilled television spokesman.
Gupta, who hosts "House Call" on CNN, has discussed the job offer with his bosses at CBS and CNN to make sure he could be released from his contractual obligations, the sources said.
His role as journalist and physician have sometimes overlapped. During the 2003 Iraq invasion, Gupta was embedded with a Navy unit called Devil Docs and, while covering its mission, performed brain surgery five times, the first of which was on a 2-year-old Iraqi boy.
Gupta's only hesitation in taking the post is said to involve the financial impact on his pregnant wife and two children if he gives up his lucrative medical and journalistic careers. But he is expected to accept the position within days.
• • •
PEOPLE
Driver Rescues Students From Burning Bus
No Injuries Reported
tiny.pl/6zn3
A bus driver in Macomb County, Mich., rescued five children and three staff members from a flaming bus Tuesday afternoon, Detroit television station WDIV reported.
The bus driver told police she was driving on 24 Mile and Schoenherr roads when she noticed sparks and smoke coming out from under the dash.
The driver safely evacuated the children and staff members before the yellow bus burst into flames.
Fire investigators said an electrical fire started the blaze.
"Other than that I don't see anything suspicious," Shelby Township Firefighter Joe Selakowski said.
Nobody was injured.
The bus driver was transporting five 5-year-old autistic children back to school from a field trip when it caught fire, school officials said.
Another bus was called to take the students back to the school.
"I am not sure they (the children) understood the significance of everything that happened," said Macomb Intermediate School District spokeswoman Beth Alberti.
• • •
Jett Travolta's Cause of Death
Leaked To Public
By Trina Hoaks, Atheism Examiner. tiny.pl/6zkm
In an interview on MSNBC today, the Bahamian Health Minister says he is “amazed and appalled” that the cause of Jett’s death was leaked to the public. Autopsy results have not been officially released and it isn’t clear if they will be, but a funeral director in the Bahamas, Keith McSweeney, revealed that the death certificate states cause of death as Seizure Disorder.
According to Radar, in an exclusive interview, family friend and lawyer, Michael McDermott said that Jett was on Depakote for a year but was taken off because its effectiveness was decreasing and it was starting to cause organ damage. The report did not say how long ago he was on the medication. He also said that to his knowledge, Jett was not on any medication prior to his death.
• • •
VOLUNTEERS
Illinois Woman's Homemade Pins Made Impact On Autism Research
By Eileen O. Daday, Daily Herald. tiny.pl/6zkg
Julia Smith of Elk Grove Village has something in common with former NFL quarterback Doug Flutie: both made contributions in 2008 to the National Autism Association's Burbacher Study.
Granted, Flutie's gift was a bit larger. He gave $10,000, by way of the Doug Flutie Jr. Foundation, named in honor of his son who has autism.
Smith, meanwhile, donated nearly $1,300 from proceeds raised from selling pins she made, fashioned out of what has become the national symbol in the fight to cure the disorder, puzzle pieces.
The Burbacher study is named for its lead researcher, University of Washington investigator Thomas Burbacher. It seeks to examine the effects of mercury exposure on the brain.
Last month, Smith sent a note to many of her supporters, updating them on her sales totals for the year.
For the last two years, she's sold the puzzle pins to raise money to fight autism. After raising $900 her first year, she raised more than $1,500 in 2007, with the bulk of it going to the Burbacher Study, while $216.20 was given to the Autism Society of Illinois.
"Thank you for buying my pins to support autism," she wrote to her customers. "I have learned a ton this year."
Autism is a complex developmental disability that affects a person's ability to communicate and interact with others.
Smith is a fifth-grader at Quest Academy in Palatine. This year, she raised her proceeds from craft fairs at Rolling Meadows and Elk Grove high schools, and from the Christkindlmarkt in Arlington Heights.
Her pins remain on sale at the Elk Grove Village Senior Center and Imagine on Main, in Oswego.
She also continues to offer her pins through members of the Pay It Forward For Autism, a nonprofit that provides networking and support for children with autism and their families.
Interestingly, unlike Flutie, Smith does not have a relative with autism. But during the last two years of selling the pins, she says she's met countless families touched by the disorder.
"I just see so many parents who work so hard," she said, "and the kids with autism, I see how hard they work just to keep up. I just really wanted to help them."
The jagged-edged jigsaw pieces represent all the disorders on the autism spectrum and also the puzzle they present that researchers are trying to solve.
Smith spends much of her summer creating the pins. In 2007, she created 600 to sell, and it was quite an effort.
Working in a home studio alongside her mother, who also designs jewelry, Smith says there are several steps in making the pins, from priming, painting and glazing them to embellishing them with glitter and gluing them to the actual pin device.
Her first year, she designed them in the shape of Christmas trees, before this past year shaping them in candy canes. She already has a design for 2009 but declined to divulge that secret just yet.
But this much she knows: Her family has lots of donated puzzles to fuel her pins for next year and, consequently, her plans to raise money for autism, remain as ambitious as ever.
Flutie, too, continues to hold fundraisers to find a cure for autism. On Jan. 12, his foundation will sponsor the sixth annual Flutie Bowl, where supporters can join with the New England Patriots at a bowling themed event in Boston.
• • •
Volunteers Needed To Train
Autism Service Dogs
By The Oregonian . tiny.pl/6zhz
Autism Service Dogs of America, a Lake Oswego nonprofit that trains dogs to help children with autism, is seeking volunteers to help raise its next batch of dogs.
The nonprofit has a litter of golden retriever puppies ready for training.The dogs help children move about safely in public and enhance their social, emotional and linguistic development.
Volunteers will be expected to take the dogs to a variety of settings, including restaurants, movie theaters and school classrooms and on board airplanes. Training and socializing events are held in the Lake Oswego area.
Details: tiny.pl/6zqh
• • •
COMMENTARY
Leave the Travoltas Alone
Uninformed take leap to outrage
By Margery Eagan, Boston Herald. tiny.pl/6zhv
With so many innuendos woven throughout coverage of John Travolta’s son’s death, you might think John Travolta killed the teen himself.
He and his wife neglected the teenage boy.
That’s one clear underlying theme here, which is why Travolta’s attorneys have combated suggestions by Bahamian police that 16-year-old Jett’s body lay dying and undiscovered for hours in their vacation home.
The couple refused to treat Jett properly because Scientologists don’t acknowledge mental illness.
That’s the second big theme.
Some advocates for autistic children have claimed that the Travoltas knowingly denied their son’s supposed autism because admitting it would mean psychiatrists and psychiatric drugs, something Scientology forbids.
It’s incredible, really, how many who know so little are nonetheless diagnosing Jett Travolta’s supposed illness, prescribing the correct treatment for that illness, and judging his devastated parents’ alleged failings.
This sort of thing is not particularly new. We judge victims of horror and disaster all the time. We do it, the theory goes, to separate ourselves from such horror, to reassure ourselves that as long as we’re more careful than those victims, we’re safe. It won’t happen to us. You know: If she weren’t walking at night, the car wouldn’t have mowed her down.
But judging celebrity victims adds a whole new layer of entitlement. The Travoltas become like cardboard pinatas, held up to bash.
Add to that the Internet factor - that is, the anonymous and often vicious comments posted on news stories and blogs covering the case - and what you have is a nauseating, venomous stew.
‘I’m sure the (autopsy) results will be whatever the Travoltas say they want them to be. Just like their self-diagnosis of what his illness was.’
‘I am a nurse . . . My theory is that he had a seizure disorder that was never treated due to their religious beliefs, and over time caused brain damage . . . It is very difficult to believe that people would not seek proven medical treatment based on their religious beliefs, especially for children, but it happens all the time.
These were among the milder postings I saw yesterday. True, the first accused the Travoltas of cheating on the autopsy; the second, again, blamed the parents for Jett’s death. But at least these weren’t dripping with rage.
The theory on all this? That commenters are just venting, saying anonymously what they’d not dare in polite company. But to me, it’s just creepy, and vile.
Read also: For Kelly Preston by Barbara Fischkin on SpectrumPublications.com tiny.pl/6zhb
• • •
What is Paul Offit's Problem?
By Anne Dachel on AgeOfAutism. tiny.pl/6znk
I had to ask myself why Dr. Paul Offit, nationally-known vaccine expert, would consider The Vaccine Book, by Dr. Robert Sears to be so dangerous that he'd put out a whole piece about it in the January 2009 issue of Pediatrics. It's especially curious, since Sears' book came out well over a year ago.
Offit's article, The Problem With Dr Bob's Alternative Vaccine Schedule, tiny.pl/6zns led to a response from Dr. Sears tiny.pl/6zn6 that is running on his website. I hope readers will take the time to read both pieces to understand first-hand what was said by each of the doctors.
Offit's overall message is that Sears is fueling fears over vaccine safety by allowing parents to choose alternative vaccine schedules for their children. Offit wrote, "Sears' book is unique. Unlike typical antivaccine books, he offers a middle ground, allowing parents to act on their fears without completely abandoning vaccines. Unfortunately, Sears sounds many anti-vaccine messages." Offit devoted the Pediatrics article to describing the ways in which Sears' book is undermining the vaccine program and endangering children's health.
In his response, Sears stated, "I believe that Dr. Offit has misconstrued the book's overall message by selectively extracting various phrases and sentences that discuss anti-vaccine ideas and worries parents have and portraying those ideas as my own." In another place he said, "I believe that Dr. Offit has greatly misrepresented the overall message of the book as being 'anti-vaccine."
I read through many of the things Sears has written and looked hard for his "anti-vaccine messages." I have to agree with him when he says he's clearly not attacking the vaccine program. Sears stated, "It is my belief that many families go unvaccinated simply because they aren't offered a more gradual option." Sears doesn't enter the controversy siding with parents. For example, he cited the studies that debunk a link between the MMR and autism, and added that "My initial worries about the MMR and intestinal inflammation are probably unfounded."
Sears has called for studies on the effects of aluminum, noting, "I've been searching and searching for human infant studies that determine what a safe level of injected aluminum is, including looking at all the studies used in the article quoted by Dr. Offit, and I can't find a single one."
Sears avoids the argument over mercury in vaccines and autism by saying, "It has been removed from virtually all vaccines, so you really don't have to spend hours researching whether or not it is harmful."
I couldn't find big issues of controversy in what Dr. Sears has written about vaccines. He said in his response, "If my book had been portrayed correctly , we would find very little to debate about." Sears is not criticizing the CDC or vaccines in general. He's simply asking for flexibility in dealing with parents who are worried about vaccine side effects. He's definitely pro vaccine.
According to Offit, even a little break from rigid adherence to the mandated schedule is dangerous. It gives parents the idea that there might be serious side effects that could be avoided by changing the schedule. And, judging by the tens of thousands of copies of Sears' book that have been sold, lots of parents are having second thoughts about blindly accepting the one-size-fits-all-kids vaccine schedule.
Two things in Sears' response to Offit Pediatrics article got my immediate attention. Sears noted that lots of parents worry about the cozy relationship between the vaccine makers and the medical community, especially those in charge of safety. Sears wrote, "In medical school we are taught to at least briefly raise an eyebrow at research funded by a pharmaceutical company, instead of simply taking it for granted."
A bit later, Sears said, "As for the issue regarding parents' trust in the vaccine manufacturers, that trust was severely shaken when it was revealed in the Los Angeles Times on February 8, 2005, that way back in 1991 a researcher at Merck sent a memo to the president of Merck's vaccine division stating that they had just realized that the cumulative amount of mercury in vaccines given to infants by six months of age was about 87 times the safety limits set by the FDA. And that information was not revealed to the public until 8 years later." Sears said he continues to put his faith in the vaccine makers but he added that "I find it surprising that any doctors can fault a parent for not completely trusting Merck after that, or the FDA and CDC departments that were supposed to be overseeing this type of issue."
+ Read more: tiny.pl/6znk
Note: The opinions expressed in COMMENTARY are those of the author and do not necessarily represent the views of the Schafer Autism Report.
LETTERS
Tabloid Travolta
I can not believe you posted this story; since when does the SAR appeal to the mass entertainment media? Leave those poor people alone! They lost their son. When I lose my son someday will you be publishing the story on your page? I think not.
Shameful. . .
-Bonnie MacGregor
RESPONSE: This item has been heavily reported in the establishment media, for better or for worse.
Try this google news search: tiny.pl/6bwp You will find hundreds of reports on this. The SAR is a news digest. That is, we digest into a daily report whatever is being published that day in the mainstream media regarding the many issues surrounding autism.
This does include some mix of tabloid like material. We try not to overdo it, however. - LS
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