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

Twins May Have Higher Risk Of Autism - Magazine * Twins May Have Higher Risk Of Autism - Magazine * Stem Cell Research and "Therapeutic" Cloning

RESEARCH

* Twins May Have Higher Risk Of Autism - Magazine

* Key Senators Targeted by Ad Campaign to Support 'Therapeutic Cloning'

* Stem Cell Research and "Therapeutic" Cloning

* Potential Cures With The 'Other' Stem Cells

* Wakefield Paper on Inflammatory Bowel Disease & Measles Virus

* Rett Syndrome: Recent Progress

EDUCATION, CARE

* Wearable Tech Helps Disabled Students

* Autism a Puzzle For Parents

* Autistic Boy Falls Out Window

Twins May Have Higher Risk Of Autism - Magazine

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London Reuters - Twins may have an increased risk of developing autism which could be due to an unknown environmental trigger that occurs in the womb before birth, according to New Scientist magazine.

Two separate studies by researchers in the United States and Britain have found a higher incidence of autism among twins.

"Being born a twin may increase the risk of developing autism," the weekly magazine said on Wednesday.

It cited research by geneticist David Greenberg, of Columbia University in New York, which found the incidence of autism was up to 12 times higher in identical twins and four times greater in fraternal twins than in the general population.

Scientists at St George's Hospital Medical School in London found a similar pattern in another database of siblings with autism.

"Among 79 sibling pairs, they found nine pairs of identical twins, which is 14 times the level of the general population," the magazine said.

The British researchers did not find an increased risk for non-identical twins but they said it could be due to the small size of the study.

Some scientific studies have suggested a genetic link for autism but the magazine said the twin studies suggest an environmental trigger before birth may be involved.

"Identical twins can be more closely associated in the womb, lacking one or two membranes that separate fraternal twins. This may result in a fiercer competition for resources," the magazine added.

Autism is a developmental disorder. Symptoms usually begin at about 18-24 months and it is more common in boys than girls.

The cause is unknown but fears that it could be linked to the measles, mumps and rubella (MMR) vaccine have led to a drop in the number of children in Britain being given the triple vaccine.

Children with autism become withdrawn and self-absorbed. Often they are unable to communicate. A minority of sufferers, known as autistic savants, show remarkable artistic, musical or mathematical skills.

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Key Senators Targeted by Advertising Campaign to Support 'Therapeutic Cloning'

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U.S. Newswire - The Coalition for the Advancement of Medical Research

(CAMR) today targeted key Senators as it expanded its national advertising campaign to support Somatic Cell Nuclear Transfer (SCNT), promising new medical research sometimes called "therapeutic cloning."

"As the vote on banning this vital research draws nearer, these ads will help Senators cut through the scare tactics of SCNT opponents and help clear up the myths," said Michael Manganiello, President of CAMR, which is sponsoring the campaign. "And they will let Senators hear from those most vitally affected by SCNT, people and families battling life-threatening diseases.

The U.S. Senate is expected to vote on a bill banning SCNT in May. In this latest phase of its advertising campaign, CAMR is buying radio and print ads in major cities in Arizona, Delaware, Indiana, Missouri, Oregon, Utah, and West Virginia.

"Ten days ago 40 Nobel Prize Laureates came out against the SCNT ban. These ads ask Senators to listen to those for whom SCNT could be a matter of life and death," said Christopher Reeve, Chairman of the Christopher Reeve Paralysis Foundation, a member of CAMR. "These ads explain that SCNT produces stem cells, not babies, using the patient's own DNA, not sperm."

The ads present the voices and faces of some of the 100 million Americans who could be helped by SCNT -- men, women and children with spinal cord injury, ALS, Alzheimer's, Parkinson's, Rett syndrome, cancer, AIDS, diabetes and many more conditions for which there is now no cure.

"SCNT has nothing to do with copying human beings and everything to do with generating stem cells that can be used to treat life-threatening medical conditions," said Kris Gulden, a paralyzed former police officer featured in the radio ads. "And it's strongly supported by the National Academy of Sciences. It's hard to believe the U.S. Senate is actually considering a ban."

"For me, this is all about the hope of finding new treatments and cures for millions of children who suffer every day," said Monica Coenraads whose daughter, Chelsea, is featured in the print ads. Chelsea has Rett Syndrome, an incurable genetic disorder that prevents her from walking, talking, or using her hands.

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Stem Cell Research and "Therapeutic" Cloning

A Christian Analysis

What is the relationship between embryonic stem cell research and "therapeutic" cloning?

[One] potential obstacle encountered by researchers engaging in embryonic stem cell research is the possibility that embryonic stem cells would not be immunologically compatible with patients and would therefore be "rejected," much like a non-compatible kidney would be rejected. A proposed solution to this problem would be to create an embryonic clone of a patient and subsequently destroy the clone in order to harvest his or her stem cells. Cloning for this purpose has been termed "therapeutic" cloning-despite the fact that it results in the cloned embryo's death.

Are embryonic stem cell research and "therapeutic" cloning currently legal?

In his widely-publicized August 9t, 2001 address, President Bush announced his long-awaited decision to appropriate federal funds only for research on the approximately 60 stem cell lines obtained from embryos who had already been destroyed. While Bush refused funding for research on stem cells obtained from not yet destroyed embryos, it is important to note that his decision applies only to the public sector. Because the U.S. has still not adopted a ban on human cloning, human embryos could indeed be cloned for purposes of stem cell research carried out in the private sector.

Why should we value the human embryo?

Underlying the passages of Scripture that refer to the unborn (Job 31:15; Psa. 139:13-16; Isa. 49:1; Jer.1:5; Gal. 1:15; Eph. 1:3-4) is the assumption that they are human beings who are created, known, and uniquely valued by God. Genesis 9:6 warns us against killing our fellow human beings, who are created in the very image of God (Gen. 1:26-27). Furthermore, human embryonic life-as well as all of creation-exists primarily for God's own pleasure and purpose, not ours (Col. 1:16).

Shouldn't it be ethical to allow the destruction of a few embryos in order to help the millions of people who suffer from diseases such as Parkinson's and heart disease?

Many proponents of human embryonic stem cell research argue that it is actually wrong to protect the lives of a few unborn human beings if doing so will delay treatment for a much larger number of people who suffer from fatal or debilitating diseases. However, we are not free to pursue gain (financial, health-related, or otherwise) through immoral or unethical means such as the taking of innocent life (Deut. 27:25).

The medical experiments in Nazi Germany should serve as just one reminder of the consequences of doing evil in the name of science. We must not sacrifice one class of human beings (the embryonic) to benefit another (those suffering from serious illness). Scripture resoundingly rejects the temptation to "do evil that good may result" (Romans 3:8).

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Potential Cures With The 'Other' Stem Cells

Investigators: Darwin Prockop, Paul Carvey

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Although human embryonic stem cells preoccupy politicians and journalists, nobody was talking about them at a stem cell symposium today. Instead, researchers are trying to turn other kinds of stem cells, ones that won't raise political hackles, into real-world cures.Darwin Prockop, professor of biochemistry at Tulane University, is betting on MSCs - adult stem cells from bone marrow stroma - with the nervous system, bone, cartilage, heart, kidney, liver, and maybe blood vessels, as possible clinical targets.

Prockop and his colleagues have come up with new conditions for growing as many as 16 million MSCs in just two weeks. The secret, he says, is to plate them at low density. At 10 cells/cm^2, 95% of the cells form an individual colony, and all clones differentiate - thus far, into bone and fat.

Because MSCs home in on damaged tissue, they probably function as a repair system, Prockop suggests. MSCs are also appealing because they are relatively easy to isolate and grow in large numbers, and easy to genetically manipulate and differentiate.

Among their other virtues, the cells have been studied for 30 years, do not cause tumors, and can be obtained from patients and grown quickly, bypassing immune system problems.

But the data on functional improvement in animal models using MSCs is still tentative, Prockop notes, adding they appear to be of some benefit in spinal cord injuries and Parkinson's disease.

"Animal model results are never quite as encouraging as we'd like them to be," he said. The researchers are "pretty sure" they are seeing astrocytes in CNS studies, but have yet to observe functional neurons.

Rather than use pluripotent cells like bone marrow, other researchers are trying to identify a specific cell for a specific disease. Neuropharmacologist Paul Carvey and his colleagues have been chosen progenitor cells from the midbrain of fetal rats, cells that could be coaxed into becoming dopamine neurons, to treat Parkinson's disease.

The primary signal that instructs a progenitor cell to become a neuron is the cytokine interleukin-1, says Carvey, director of the Neuropharmacology Research Laboratories at Rush University in Chicago.

The researchers watched the cells develop, and selected and cloned cells that were near-neurons. They then grafted the cells into brains of rats suffering from a Parkinson's-like disorder and effectively cured the symptoms, Carvey says. He and his colleagues are now looking for progenitor neurons in monkey fetuses.

"Is this really a dopamine neuron? We don't know for sure," Carvey acknowledged. "But this is first time in my career that we're potentially looking at a cure."

Recent studies suggest that in mouse models of CNS injury and degeneration, neural stem cells migrate to the injury and differentiate toward replacement of dying cells, not all of which are neurons, notes Evan Snyder assistant professor of neurology at Harvard Medical School.

"Maybe the smartest way to fix problems in the nervous system is to recapitulate development," Snyder said. "You want multiple cell types, which may be one appealing aspect of having a multipotent cell."

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ds=11950955&dopt=Abstract

Uhlmann V, Martin CM, Sheils O, Pilkington L, Silva I, Killalea A, Murch SB, Walker-Smith J, Thomson M, Wakefield AJ, O'Leary JJ. Department of Pathology, Coombe Women's Hospital, Dublin 8, Ireland Department of Histopathology, Trinity College, Dublin, Ireland, Department of Paediatric Gastroenterology, the Royal Free Hospital, London, UK Department of Medicine, The Royal Free Hospital and University College Medical School, London, UK.

Aims: A new form of inflammatory bowel disease (ileocolonic lymphonodular hyperplasia) has been described in a cohort of children with developmental disorder. This study investigates the presence of persistent measles virus in the intestinal tissue of these patients (new variant inflammatory bowel disease) and a series of controls by molecular analysis.

Methods: Formalin fixed, paraffin wax embedded and fresh frozen biopsies from the terminal ileum were examined from affected children and histological normal controls.

The measles virus Fusion (F) and Haemagglutinin (H) genes were detected by TaqMan reverse transcription polymerase chain reaction (RT-PCR) and the Nucleocapsid (N) gene by RT in situ PCR. Localisation of the mRNA signal was performed using a specific follicular dendritic cell antibody.

Results: Seventy five of 91 patients with a histologically confirmed diagnosis of ileal lymphonodular hyperplasia and enterocolitis were positive for measles virus in their intestinal tissue compared with five of 70 control patients.

Measles virus was identified within the follicular dendritic cells and some lymphocytes in foci of reactive follicular hyperplasia. The copy number of measles virus ranged from one to 300 000 copies/ng total RNA.

Conclusions: The data confirm an association between the presence of measles virus and gut pathology in children with developmental disorder.

PMID: 11950955 [PubMed - as supplied by publisher]

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Rett Syndrome: Recent Progress

"Rett syndrome: recent progress and implications for research and clinical practice."

ds=11944872&dopt=Abstract

Annotation: Kerr A.Department of Psychological Medicine, Glasgow University and the Royal Hospital for Sick Children, UK. amk5m@clinmed.gla.ac.uk

Background: Rett syndrome was first described 40 years ago as a profoundly disabling condition in girls.

Method: Over the last 20 years' national surveys, neuropathological and neurophysiological research have steadily improved understanding of its character and natural history. RESULTS: In the last two years identification of the causative mutations in the gene methyl CpG binding protein 2 (Xq28) has led to a sudden expansion in knowledge about the underlying developmental disorder, with important implications for clinical practice and new opportunities to develop more effective intervention.

Conclusions: It is now clear that the disorder occurs in males and females and that there is a wide range in severity.

PMID: 11944872 [PubMed - in process]

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Wearable Tech Helps Disabled Students

Disabled students are learning better -- and in some cases communicating effectively for the first time -- through an application of wearable computing technology that sprang from the initiative of an Ohio school district.

The idea took shape when a teacher in the Coventry district, near Akron, Ohio, heard about Xybernaut wearable computers and asked the company to help put together a pilot program.

A single test case led to the award of state grants to purchase wearable computers for the Coventry district, and Xybernaut is creating a program to help other districts find funding.

"We did a case study with a nine-year-old boy with autism," Jeanne Gides, director of special services with Coventry School District, told Wireless NewsFactor. "When the boy first got the computer, he was not communicating at all. By June, he was speaking two- and three-word sentences."

The tech package allowed the boy to make his computer speak for him. He could touch a screen with pictures and words and put together a basic sentence, such as, "I am hungry." He began communicating through the computer and within months had begun verbalizing on his own. Furthermore, he was spending more time focused on learning.

"At the beginning of the year, he was spending 120 minutes a day 'on task,'" Gides said. "With the wearable computer, that increased to 300 minutes per day."

XyberKids Cometh

Xybernaut customized the fifth and current version of its mobile assistant, MA V, for child use. The bulk of the hardware, including an oversized battery that can last the entire school day, fits into a backpack that allows students to carry the device with ease from class to class.

"We put the computer, and an audio speaker integrated into the system, into the backpack," Xybernaut spokesperson Michael Binko told Wireless NewsFactor. The flat-panel touch-screen monitor is the only thing that needs to be taken out of the backpack to use the system.

More important than mobility, perhaps, is the ruggedness of the device. The Coventry district students receiving the equipment have cerebral palsy and other conditions that affect fine motor skills -- meaning that the device gets jostled and dropped a lot.

"They probably would ruin a laptop in less than a week," Gides said. "But Xybernaut designed its equipment for the military, and it's very much more durable."

Navigating the Grant Maze

Children are not the obvious target for transferring military hardware to commercial uses. In fact, Xybernaut had not been aggressive in the education market until the Coventry project came along, Binko said.

The company has branded the current version of MA V and its related software, including a speech output program from Mayer-Johnson called Speaking Dynamically Pro, with the name "XyberKids." The company is working on a template to help other educators manage the complex grant process to get funding for the technology.

"That's crucial," said Bob Walczak, executive director of Computer Using Educators (CUE), a nonprofit group that helps teachers incorporate technology into the classroom.

Teachers are often too busy to keep up with the scattered array of funding opportunities, the paperwork and the deadlines -- "especially for smaller districts," Walczak told Wireless NewsFactor. "Large districts often have grant writers on staff. Smaller districts with fewer resources don't, and are often unable to participate in these grant opportunities."

Wishes Granted

Following the success of the initial pilot, which began in March 2001, Xybernaut helped Coventry set up a larger pilot with four more units. These were given to students with a variety of challenges -- from a 17-year-old with cerebral palsy to younger children with autism and Tourette's Syndrome.

The pilot has moved out of the test phase, Gides said. A grant from the Martha Holding Jennings Foundation in Cleveland has provided three more of the US$5,000 units, and funds from the state of Ohio have purchased an additional eight. Some are already in students' hands, while others are being readied for distribution.

The technology engages students in a way that gives them exactly what they need and frees the teacher to work with other students, Binko said. "Autistic kids, especially, learn fastest through repetition," he explained. But once the teacher has gone through a lesson, she might need to move on to other students.

"She might have five or 10 other kids to teach, but the computer can be available to that one student, and it's very good at repeating things, such as syntax. The kid can press a button, and the computer will say it over and over," he said.

The Right Stuff

With communication comes participation. Gides said the XyberKids package has allowed some of the students to move from special-needs environments into mainstream classrooms. CUE's Walczak pointed out that anything that helps a young boy or girl not feel different or marginalized is a valuable tool.

"I think kids with special needs, if not handled properly, can think of themselves as standing out from the crowd," he said. "They receive all sorts of unwanted attention, and most kids -- special needs or not -- don't want that kind of extra attention, especially in adolescence."

Gides said the tools have been effective in small and surprising ways. The 17-year-old with cerebral palsy, who had severe communication impairment, went with his mother to a fast-food restaurant shortly after getting the XyberKids backpack.

"She said, 'Oh, I'll get him a cheeseburger. He always eats a cheeseburger,'" Gides recalled. "But when he got up there, using the wearable computer, he asked for a chicken sandwich. His mother was surprised, but it was the first time he'd been able to voice his own choice."

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Autism a Puzzle For Parents

[By Allison Schaefers. Nassau Neighbors.]

In many ways, Stephanie Willaford, 16, is almost like every other kid.

She likes to gather with friends from her Girl Scout troop to talk about boys and other secret teen stuff. She loves shooting hoops on the basketball court, drawing pictures and going camping. And she wants to date.

She seems like a typical teen. But she's not.

Willaford, who lives in Fernandina Beach, has autism, a developmental disorder that affects her senses. She's one of over half a million people in the U.S. who have been diagnosed with the condition, which causes them to see, hear, taste and feel differently than other people.

Willaford, who attends a special autism class at Fernandina Beach High School, has trouble perceiving people's thoughts, feelings and intentions, said her mother, Melinda Willaford.

Because she's different, Willaford isn't always readily accepted by her peers, or invited to participate in things that are going on around her, her mother says. She and her family have to work hard to make people understand when she looks away from someone, or seems indifferent, it doesn't mean that she doesn't want to be included.

April is Willaford's time to be heard.

It's National Autism Month, a time when advocates come together to increase knowledge about the baffling disorder. Autism is more common than multiple sclerosis, cystic fibrosis or childhood cancer, but the disorder is often misunderstood or misdiagnosed, Melinda Willaford says.

Melinda Willaford is wearing a brightly colored puzzle ribbon this month in honor of her daughter and the many like her.

Current research has determined that people with autism have biological or neurological differences in their brains, but its cause still is a puzzle for researchers. That's why the symbol for autism is a puzzle, Melinda Willaford said.

"Autism is very frustrating," Willaford said. "There's no standard type or typical person with autism. There are no medical tests to diagnose autism. The symptoms and characteristics of autism are very different in each person."

Some autistic people, like Stephanie Willaford, show an absence of verbal communication and eye contact and may seem aloof. Others, like 6-year-old Connor McIntyre of Fernandina Beach, who has a high-functioning form of autism, are very talkative.

There are many treatments and therapies for autism, but there is no cure, Melinda Willaford said. While many autistic people make enough progress to lead their lives in the mainstream, others live quiet lives, trying to hide from a world that disturbs them and short-circuits their mental abilities by sending them into sensory overdrive, she said.

Diagnosing the problem

The first signs of autism usually develop before age 3. In Willaford's case, her mother noticed that she was not into pretend play and that her language abilities lagged behind those of other children.

"I was at the park and I saw other children were way ahead of her in their language abilities," Willaford said.

After many years of intense speech and reading therapy, Stephanie Willaford has learned how to have a conversation.

"She used to just echo what I'd say," Melinda Willaford said. "Sometimes, she still does."

Keeping her in a conversation is also difficult, the mother said.

"When you talk to her, she'll look away," she said.

Connor's mother, Marianna McIntyre, said that's typical of autism. Despite his disability, Connor is in a mainstream class and is reading on track. But he battles some of the same symptoms, McIntyre said.

"It's too much stimulation for them to handle," McIntyre said. "They can't look at you and hear you at the same time."

And although Stephanie Willaford and Connor understand some words, it's hard for them to understand the meaning of a full sentence, or the nuances of language. They struggle to read body language, or to hear emotions like joy, sorrow, laughter or sarcasm.

"Talking to someone is like visiting a foreign country for Stephanie," Willaford said. "Someone is speaking and you think, 'I know that word,' but by then they've walked away."

Other times, Willaford will violate social traditions. She'll stand too close, or talk out of turn. She doesn't understand the concept of personal space because she can't see things from someone else's perspective, her mother said.

That's another typical autism trait.

"Connor will try to show you a picture and get right in your face," McIntyre said.

At other times, Connor might seem distant. His mother said his odd habit of staring at obscure objects for hours was what led to his diagnosis.

At 2 1/2, Connor would be content to lay down at the playground and stare at the sky.

"I told my husband, 'Dave, that's a little odd,' " McIntyre said. "He said, 'Well, maybe he's a nature lover.' "

Connor also was unduly fascinated by red toe-nail polish, McIntyre said.

"He's quirky, and he's eccentric. But, he's real cute," she said.

Moving Forward

When Connor was first diagnosed with autism, McIntyre and her husband reacted with sadness, Marianna McIntyre said. Confused and not knowing where to turn, the couple wondered if they should spend his college fund on treatment.

"Every parent thinks that when you get a diagnosis like this that there is a place you can go, a procedure you can take, but it just isn't so," McIntyre said. "We were beside ourselves."

Early intervention programs weren't available in Nassau County, so the McIntyres had to learn to help Connor themselves. They started with the basics. He needed to learn to sit and to look people in the eye. They also had to teach him to brush his teeth, go to the bathroom and read, all in stages.

"They learn differently; everything has to be in small steps. But eventually the day came when he could do it by himself. He's ahead of his class, and yet he's behind," McIntyre said

Eventually, McIntyre said, Connor will gain the learning skills needed to attend college. She hopes he'll have the social skills to marry and have children someday.

"The other day, we saw a baby and I asked Connor if he thought that someday he might have one. He said, 'Maybe, but not right now.' And, I thought, he's catching on," McIntyre said.

Moments like those make McIntyre and her husband hopeful that someday Conner will be able to perform in the mainstream world.

Willaford has similar dreams for her daughter. She hopes Stephanie Willaford will be able to live independently in a supportive home environment. She also wants her to have college experience.

College study could be too difficult for Stephanie Willaford to master, given the challenges of her verbal disability, but her mother said she's exploring the possibility of helping her get a vocational job at Florida Community College at Jacksonville, or any campus where there are plenty of young people.

Despite her disability, Stephanie Willaford is quite social, her mother said.

"She is aware of the social life and she likes to be around people," Willaford said. "Sometimes she'll ask me, 'Why am I different? How can I get a boyfriend? Drive a car?' "

Going to events like Girl Scouts and playing challenging sports with her disabled peers fills some of the social need for Stephanie, her mother said.

It also helps make others more aware of autism.

"I've learned that although people are somewhat different, they can do just as much," said Amanda O'Brien, a 13-year-old friend of Stephanie's from Girl Scouts.

They've been in the same scouting troop since the third grade.

Samantha Vadnais, 13, a newer friend of Stephanie's from Girl Scouts, said Stephanie has taught her a few things about people who live with autism.

"I'd never met anyone with autism," Vadnais said. "It surprised me how much she knew and how much she related. I'm more open to people with disabilities now. I see the kids in the special classes and it makes it easier for me to communicate with them and to relate to them."

Exposing Stephanie Willaford to other people helps foster understanding and acceptance for her disability, her mother said.

It also helps make her life less of a puzzle to others. And that, more than anything else, is what Melinda Willaford wants for her daughter.

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Autistic Boy Falls Out Window

Denver AP - A woman was arrested on suspicion of attempted murder and accused of throwing her 7-year-old autistic son from a third-floor window.

The child, whose name was not released, was listed in serious condition Tuesday at Children's Hospital after he tumbled from the bedroom window of an apartment that he and his mother, Cecelia Martinez, 31, were visiting Sunday. The hospital did not immediately return calls about the boy's condition Wednesday.

At a court hearing Tuesday, Martinez was told that prosecutors could also file charges of attempted murder, child abuse and assault against her. No bail was immediately set. She has no previous arrest record.

Police say they do not believe the boy could have jumped or fallen from the window by himself.

"It would have been difficult at best for the child to have done this to himself," Lt. Jon Priest said.

Martinez's boyfriend, Clint Fenner, 38, said the fall was accidental.

Fenner said his roommate told him the little boy was alone in the bedroom and leaned against a window screen that gave way. Martinez was in the living room, said Fenner, who was not home at the time.

"She didn't throw no kid out the window," Fenner said.

Autism is an incurable neurological disorder that affects about one of every 1,000 children. It prevents individuals from properly understanding what they see, hear and sense, resulting in severe problems with social relationships, communication and behavior. Copyright © 2002 Associated Press Information Services, all rights reserved.

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We're Still Seeking to Contact Independent Autism Advocacy/Support Parent Groups

If you are part of a parent group trying to get services for your child, sharing resources, offering support, etc. or know of such a group, please send to this newsletter the group's name, an overland mail address and a phone number. We already have some of you listed on the FEAT website, but it is sorely in need of an update.

Some autism groups are building a nationwide advocacy network and everyone doing advocacy needs to be plugged in. Important - Contact Lenny Schafer at editor@feat.org _________________________________________________________________

Lenny Schafer, Editor@feat.org . CALENDAR EVENTS@feat.org Michelle Guppy

Server: Michael McIntire . Ron Sleith . Kay Stammers . Edward Decelie

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