FEAT DAILY NEWSLETTER Sacramento, California

"Healing Autism: No Finer a Cause on the Planet" ________________________________________________________________

TREATMENT

* Megavitamins May Be Useful Treatment For Many Genetic Diseases

* FDA Approves First Synthetic Secretin

RESEARCH

* Reading the Mind From Eye Gaze

AWARENESS

* Special Boy, Special Day

* "Paradox Lake" Film: Seeing a Scrambled World Through Autistic Eyes

EDUCATION

* School Advice Hotline for Parents

Megavitamins May Be Useful Treatment For Many Genetic Diseases Or just good insurance to tune up body's metabolism

Linus Pauling's claim that megadoses of vitamin C can prevent colds remains unproven, yet high doses of some vitamins could play a big role in the treatment of disease and perhaps slow the effects of aging, according to a University of California, Berkeley, biochemist.

In a review article in the April issue of The American Journal of Clinical Nutrition, UC Berkeley's Bruce N. Ames lists more than 50 genetic diseases successfully treated with high doses of vitamins, most of them rare inborn metabolic diseases due to defective enzymes.

Ames found a common thread in the effectiveness of these megavitamin therapies that suggests there may be many more diseases treatable with high-dose vitamins, in particular the eight B vitamins like niacin, thiamine and pyridoxine. And because aging involves similar biochemical deficiencies, megavitamins may help perk up an increasingly older population.

"I suspect that the big impact is going to be in aging," Ames said, though younger people, too, might benefit from supplementary B vitamins to "tune up" their metabolism. Ames is a professor of molecular and cell biology at UC Berkeley and a researcher at Children's Hospital Oakland Research Institute (CHORI).

Megadose vitamin therapy is the use of vitamins in amounts at least 10 times greater than the recommended daily allowance, or RDA. Ames noted that B vitamins are sold over the counter in dosages up to 100 times the RDA, and are generally considered safe at such levels.

In his paper, co-authored with recent UC Berkeley graduate Ilan Elson-Schwab and former CHORI technician Eli A. Silver, Ames argues that the key to the effectiveness of high-dose vitamin therapy lies in the role vitamins play in the body. Vitamins are converted to coenzymes, which team up with enzymes to perform some essential metabolic function.

As Elson-Schwab found in a computer sweep of the literature, about 50 diseases result from a genetic mutation that reduces the ability of an enzyme to bind to its coenzyme, thereby reducing the rate at which the enzyme catalyzes a molecular reaction. Saturating the body with high doses of the appropriate vitamin increases coenzyme levels to overcome the binding defect and boost the reaction rate towards normal.

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Flushed with alcohol Asians who turn beet

red after drinking alcohol can chalk it up to a

genetic variation, or polymorphism, that prevents

them from quickly metabolizing alcohol. This

probably is responsible for the low incidence of

alcoholism in Asian countries, but it also contributes

to higher rates of oral, throat and stomach cancers.

Vitamin B-6, or niacin, might help alleviate the

problem, Ames said.

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Beans & malaria Though packed with protein and

fiber, beans have always been problematic.

In the 6th century BC, the Greek geometer Pythagoras

even founded a cult that prohibited the eating of fava

beans, the main bean in the Mediterranean at the time.

Ames thinks Pythagoras based his proscription on a

common medical problem triggered by eating fava beans,

and suggests that some forms of the problem are caused

by defective binding between an enzyme and its

niacin-based coenzyme.

* * *

"These 50 diseases are just the tip of the iceberg," Ames said. "Individual doctors have noticed this, but nobody put it all together. Now, doctors are going to try high-dose vitamin therapy the minute they know a coenzyme is involved in a disease or there is a problem with the substrate. It makes sense, since many of the vitamins are generally recognized as safe in large doses. I think this kind of thing will turn up all over once people start looking." In the paper, Ames and Elson-Schwab estimate that up to one-third of all mutations in a gene may affect binding to a vitamin-derived coenzyme, which means that high-dose vitamin therapy might reverse the effects of these mutations.

The theory has far broader implications than just the treatment of genetic disease. The human genome is rife with genetic variation that probably affects enzyme-coenzyme interactions, and thus vitamin requirements.

High-dose vitamins might tweak enzyme functioning enough to improve the health of many segments of society, Ames said. Eliminating vitamin and mineral deficiencies will restore what he calls "metabolic harmony." "Zinc and iron deficiency, vitamin C, B-12 and B-6 deficiencies are very common," he said. "Yet, a multivitamin pill costs only a penny to make - you can buy a year's supply for ten dollars. Everybody in the world should take one as insurance and try to eat a good diet."

Flooding the body with an excess of some enzyme cofactors may perk up the aging body, too, since aging is accompanied by oxidative damage to many proteins and enzymes. Last month, Ames and his colleagues reported in Proceedings of the National Academy of Sciences that aging rats responded to treatment with an antioxidant, alpha-lipoic acid, and another substance, acetyl-L-carnitine, that binds to an important enzyme in the energy-producing organs of each cell, the mitochondria. Treated mice were more energetic and had better memory.

The extra acetyl-L-carnitine, he said, compensates for the defective binding of the enzyme, carnitine acetyltransferase. Together, these two play a key role in burning fuel in mitochondria.

Ames first suspected that enzyme/coenzyme binding might be at the root of many diseases while teaching an undergraduate laboratory course in biochemistry 30 years ago. As students isolated mutant microbes and characterized the defective genes, they found that many coded for enzymes with a problem binding to a cofactor. In Elson-Schwab, Ames found an energetic undergraduate able to search the literature for diseases that fit this scenario and to locate biochemical data indicating a cause.

Of the 50 diseases he tracked down, 11 respond to pyridoxine, or vitamin B-6. These include enzyme diseases that lead to blindness, mental retardation, kidney failure and developmental problems. In all of these, scientists have pinned the disease to a problem in how an enzyme binds to a cofactor derived from vitamin B-6.

The authors point out that, of 3,870 known enzymes, 22 percent use cofactors and 112 of those utilize B-6. There may be diseases associated with every one of these enzymes, each treatable, to some degree, by megadoses of B-6 or another vitamin or cofactor. Also, due to genetic variation, some people have enzymes with less coenzyme binding affinity than normal, and thus are able to benefit from high doses of particular vitamins.

The authors found 22 other diseases caused by defective binding to a cofactor derived from a B vitamin, including thiamine (B-1), riboflavin (B-2), niacin (B-3), cobalamin (B-12) and biotin (B-7).

"What's interesting is, health food stores sell B-100 pills with 50 times the normal requirement for vitamin B-6, which is about a milligram. It never made much sense to the nutrition community, and yet the public is buying these pills. Why? "Maybe somebody just feels better when they take these high B-vitamins. All the neurotransmitters in the brain, such as serotonin, use vitamin B-6. So maybe when you take high levels it raises serotonin levels in the brain.

There is some evidence for that." Ames said individual doctors have noticed the connection between coenzyme binding problems and response to high-dose vitamin therapy, but no one had put all the puzzle pieces together. Pauling even suggested, with little evidence, that much mental illness may be due to deficiencies of some micronutrients, and that brain dysfunction may involve mutations that affect enzyme-cofactor binding.

Provided physicians use safe dosages, "there is potentially much benefit and possibly little harm in trying high-dose nutrient therapy because of the nominal cost, ease of application and low level of risk," the authors concluded in their paper.

The research was funded by grants from the Ellison Foundation, the National Foundation for Cancer Research, the Wheeler Fund of the Dean of Biology at UC Berkeley and the National Institute of Environmental Heath Sciences Center, funded by the National Institutes of Health.

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FDA Approves First Synthetic Secretin, To Help In Diagnosing Pancreatic Illness

s_synthetic_secretin_2 <-- address ends here.

Doctors struggling to diagnose pancreatic illnesses will soon get a new aid, as the U.S. government approved the first synthetic version of the hormone secretin Friday.

Secretin is a digestive enzyme best known as a controversial, unproven treatment for autism. But the substance, derived from pig intestines, long was used to help diagnose serious pancreatic dysfunction or a pancreatic tumor called a gastrinoma. Then in 1999, the sole secretin producer quit selling; dwindling leftover supplies have been available since then only in clinical trials.

The Food and Drug Administration gave approval Friday to SecreFlo, the first synthetic secretin, for pancreatic diagnosis. It was classified an orphan product because only about 15,000 patients a year may need it — but for them, it is an important diagnostic tool.

"Secretin is still the best way" to diagnose pancreas illnesses, said Dr. Lilia Talarico, FDA's gastrointestinal drugs chief.

The drug's effect on gastrointestinal secretions help diagnose pancreatic dysfunction, where thick mucus prevents essential enzymes from breaking down food. Secretin's effects on another hormone in the bloodstream can help doctors spot a gastrinoma earlier than with other tests.

A synthetic version carries less of a risk of allergic reactions, Talarico said.

Also, the new secretin is 99.6 percent pure, while the pig-derived product was only 60 percent pure, said Edward D. Purich of ChiRhoClin Inc., a five-person company in Silver Spring, Maryland, that came up with the synthetic idea and hired a mix of other companies to help make it reality.

The drug will be marketed by RepliGen Corp., which is conducting clinical trials of secretin and autism.

A price has not yet been set, Purich said. The first batches should begin selling this summer, although he said doctors can contact ChiRhoClin to get doses sooner for possible gastrinoma patients.

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Reading the Mind From Eye Gaze.

ds=11931917&dopt=Abstract

Calder AJ, Lawrence AD, Keane J, Scott SK, Owen AM, Christoffels I, Young AW. MRC Cognition and Brain Sciences Unit, 15 Chaucer Road, CB2 2EF, Cambridge, UK Baron-Cohen

[Mindblindness: an essay on autism and theory of mind. Cambridge, MA: MIT Press, 1997] has suggested that the interpretation of gaze plays an important role in a normal functioning theory of mind (ToM) system. Consistent with this suggestion, functional imaging research has shown that both ToM tasks and eye gaze processing engage a similar region of the posterior superior temporal sulcus (STS).

However, a second brain region associated with ToM, the medial prefrontal (MPF) cortex, has not been identified by previous eye gaze studies. We discuss the methodological issues that may account for the absence of MPF activation in these experiments and present a PET study that controls for these factors.

Our experiment included three conditions in which the proportions of faces gazing at, and away from, the participant, were as follows: 100% direct [0% averted], 50% direct-50% averted, and 100% horizontally averted [0% direct].

Two control conditions were also included in which the faces' gaze were averted down, or their eyes were closed. Contrasts comparing the gaze conditions with each of the control conditions revealed medial frontal involvement. Parametric analyses showed a significant linear relationship between increasing proportions of horizontally averted gaze and increased rCBF in the MPF cortex.

The opposite parametric analysis (increasing proportions of direct

gaze) was associated with increased rCBF in a number of areas including the superior and medial temporal gyri. Additional subtraction contrasts largely confirmed these patterns. Our results demonstrate a considerable degree of overlap between the medial frontal areas involved in eye gaze processing and theory of mind tasks.

PMID: 11931917 [PubMed - in process]

* * *

Autism and the X Chromosome

No linkage to microsatellite loci detected using the affected sibling pair method.

ds=11932990&dopt=Abstract

Schutz CK, Polley D, Robinson PD, Chalifoux M, Macciardi F, White BN, Holden JJ. Department of Biology, McMaster University, Hamilton, Ontario, Canada.

The etiology of autism spectrum disorders (ASDs) is poorly understood, although it is clear that genetic factors play a major role. ASDs appear to be a heterogeneous group of disorders, making genetic analysis difficult in the absence of etiologically definable subgroups.

The excess of males in the affected population has led to suggestions that an X-linked locus could play a role in the causation of autism or a related pervasive developmental disorder. To examine this, we have investigated the genotypes of 31 families with two or more affected boys, at a series of 16 highly polymorphic loci distributed along the X chromosome with an average interlocus distance of 12 cM, in order to identify regions of significantly increased concordance among pairs of affected brothers.

No locus tested showed a significant increase in concordance, supporting findings by others that there are no genes of major effect located on the X chromosome that contribute to increased susceptibility to ASD. Copyright 2002 Wiley-Liss, Inc.

PMID: 11932990 [PubMed - in process]

* * *

Special Boy, Special Day

category=ad%20lib&story_id=139491&y=2002&m=4

"I WANT to be dropped off today," said the little voice from the back seat.

My heart plummeted. It was my five-year-old's first step towards independence.

"What do you mean by 'dropped off'?" I asked, hoping against hope that it did not mean a concrete sign that he was growing up.

"It means I get out of the car and I go down by myself," said the ever-literal child. "All the other children do."

"No they don't," I said, well aware I am arguing with a five-year-old.

"I see lots of mothers and fathers who wait at the door with their children." I know, because I am usually one of them.

But he was adamant that today was the day. So, after I'd tied his shoelaces (we missed the starting-school deadline on that one), fixed his collar, taken out his lunchbox and given him endless instructions, I'd run out of delaying tactics so I kissed him and off he went.

Those little legs and the cherubic look of most five-year-olds makes you wonder what on earth we are doing sending them off to school when they are obviously still babies. Why don't we do as some cultures do and wait until they are older? At least until they look like children, and not fine-china miniatures?

My self-esteem was fragile before this morning anyway, battered by a plethora of insidious events designed to undermine the strongest, so I took every mother's prerogative and had a good cry.

Actually my tears have lasted far longer than the obligatory first week (I overheard one kindergarten mum telling another, "It's day four, you know! You should be over all that now!"

But, like the grieving process, separation is individual and there is no time limit.

What makes this situation all the more painful is that my little five-year-old must cope with all the stresses of starting school, as well as the burdens and blessings that his autism-spectrum disorder brings.

He is autistic but not obviously so. Forget the Rainman images; his signs can be so subtle that most people miss them and that only makes life harder.

He gets treated "normally" a lot of the time, and that's great. He copes so well (up to a point) that he receives the same expectations as everyone else. That is certainly what I want for him; I want that sameness, that normality; but I know, despite the exceptional strides he has taken, that he will always "walk to the beat of a different drum", that he will process things differently and that he will see a different world to the one most see.

He gets a "head start" with some of his work at school, he tells me, and that is because he is "special". "Yes you are," I say; and he is.

Despite the long and sometimes rocky path since his diagnosis, I count my blessings that we had access to Early Intervention support, play therapy, speech pathology and counselling through the Child Health and Development Service. The ACT is a wonderful place for such services, and I remain grateful that he was able to access that assistance.

The wonderful people who have had a part in his progress to date would be so proud, including chiropractor-therapist and mentor Yann Savy, who took a leap of faith and tried some different techniques to help his cognitive and neuro-emotional processing.

The teachers at his former preschool would be so proud, as I am, that he can now write his name without copying it and that he can count to 20.

He desperately wants to read to cater for his enormous thirst for knowledge, and I hope that day is not too far away.

In the meantime, I will "drop him off" if he wishes, and the days he wants me to hold his hand I will treasure because those times are so transient and precious.

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* * *

"Paradox Lake" Film: Seeing a Scrambled World Through Autistic Eyes

06

"Paradox Lake" opens with M.R.I. pictures of the human brain that look like satellite pictures of the surface of a distant planet. Przemyslaw Reut's arresting new film, which will be shown tonight and Sunday in the New Directors/New Films series at the Museum of Modern Art, weaves together drama, documentary and experimental video techniques. It also has some of the haunting otherworldliness of science fiction. The world it explores, with impressive sensitivity and imagination, is the world of autism.

That neurological disorder — which, according to the film, affects one out of every 500 children — has long been misunderstood, not least in the movies. Mr. Reut has avoided the pitfalls of sentimentality and freak-show exploitation by shooting "Paradox Lake" at an actual camp for autistic children and young adults who are shown as themselves. Whereas a movie like "Rain Man" is content to assert the humanity of its autistic subject, and so to affirm the humanity of its nonautistic hero, Mr. Reut goes further. The campers are distinct individuals, each of them living in a unique, sometimes impenetrable universe of meanings and perceptions.

"These kids will change your life," remarks the director (Jason

Miller) of the agency that runs the camp, in upstate New York. This is no less insightful for being something of a truism. Matt (Matt Wolf), a young New Yorker, comes to work at the camp after encountering a young autistic man on a Times Square subway platform. Quiet and a bit sickly, Matt seems to be at loose ends, and he may see his new job as a means of injecting some structure and connection into his life.

The job is far from easy. The campers, whose ability to communicate is severely hampered, and who are prone to repetitive, ritualized behavior, are challenging enough, but so are Matt's co-workers. One of them, a brusque, heavy-set fellow named Ernie (Ernie Jurez), becomes Matt's nemesis after they argue repeatedly about how to handle their charges. Ernie's tough, streetwise behaviorism clashes with Matt's softer, more relaxed approach. In the meantime, a brief romance between Matt and Rachel (Phe Caplan) leaves bad feelings in its wake.

These small dramas are presented in a low-key, naturalistic manner. Mr. Reut uses a hand-held super 16-millimeter camera to give his scenes a raw, furtive feel. As the summer progresses, Matt becomes fascinated with a 12-year-old girl named Jessica (Jessica Fuchs), a camper who perceives the world as an intricate rebus, a crossword puzzle made of objects, words and stories. Matt begins to participate in Jessica's private games, infuriating Rachel, who is the girl's designated caretaker.

In exploring the link that forms between Matt and Jessica, Mr. Reut switches to digital video, manipulating the color and texture of the video images to give them a hallucinatory intensity. This may not be how the world looks through autistic eyes, but we feel, like Matt, as if we are on the brink of a new, inexpressible understanding of how it might appear.

By the time the story has arrived at its surprising climax, we have been awakened to a new appreciation of the brain and its mysteries. But perhaps putting it that way is too detached, too abstract, for the power of "Paradox Lake" comes from the way it locates these mysteries in a set of vivid, difficult human relationships.

PARADOX LAKE

Directed and edited by Przemyslaw Reut; written by Wieslaw Saniewski and Mr. Reut; director of photography, Mr. Reut; music by Maciej Staniecki; art director, Christine Hamer; produced by Ken Kushner and Mr. Reut. Running

time: 85 minutes. This film is not rated. Shown tonight at 6 and Sunday at 8:30 p.m. at the Roy and Niuta Titus Theater, Museum of Modern Art, 11 West 53rd Street, Manhattan, as part of the 31st New Directors/New Films series of the Film Society of Lincoln Center and the department of film and media of the Museum of Modern Art.

WITH: Matt Wolf (Matt), Jessica Fuchs (Jessica), Phe Caplan (Rachel), Bella "Jaffa" Levy (Mother), Ernie Jurez (Ernie), John Gelin (Buddha), Dan Luciano (Neurologist), Beata Tyszkiewicz (Family Doctor) and Jason Miller (Camp Director).

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School Advice Hotline for Parents

AP - Parents with questions about reading, school discipline, special education or other education matters will have access next week to free, anonymous advice from a school principal or psychologist through a special toll-free number.

The National Principals' Hotline, an annual service of the National Association of Elementary School Principals, averages about 1,000 calls a year. The number -- 1-800-944-1601 -- will operate 2-8 p.m. EDT Sunday, 8 a.m.-8 p.m. Monday and 8 a.m.-2 p.m. Tuesday.

Callers generally ask about reading problems, testing, learning difficulties, safety worries, school discipline and entry to kindergarten.

This year's hot line will originate from San Antonio, Texas, where the association's 5,000 elementary school principals will hold their annual meeting. Callers also may receive free copies of "What Parents Should Look for in Their Child's Elementary School" and "A Parent's Guide to Helping Children Cope with Fears."

The hot line has operated for the past 13 years. It is co-sponsored by Family Circle magazine and the financial firm TIAA-CREF.

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APRIL 21, 2002 - 12 Noon to 5pm

THIRD NATIONAL AUTISM AWARENESS RALLY:

"The Power of ONE! I.D.E.A."

FREE and OPEN TO THE PUBLIC

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FEAT'S "Night of Caring" April 27

Sacramento FEAT is holding its' 9th Annual "Night of Caring" Dinner and Auction fundraiser on April 27, 2002. If you have been helped by the FEAT and the Daily Newsletter and would like to show your appreciation you can by supporting our fundraiser. Make an auction contribution or sponsorship donation. Please call 916-843-1536 for more information. Thank you.

FEAT is a tax-exempt non-profit corporation

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