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February 5, 2002        News Morgue Search  www.feat.org/search/news.asp

 

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RESEARCH

·        Wakefield Fest: Study, BBC Program Coverage Online

 

CARE

·        Consumer Electronics Show – Neat Gizmos for Autism

·        Action Alert: Texas Governor Drags Feet on Appointments for Autism

·        Toronto Parents Demand Improved Services For Autistic Children

·        Buying, Breaking Bread for Autism Research

 

 

Wakefield Fest: Study, BBC Program Coverage Online

Research report

·        Here is the abstract of Andy Wakefield’s new rearch report, “Potential viral pathogenic mechanism for new variant inflammatory bowel disease”, which some see as “smoking gun” evidence for a measles/autism connection.

The link for the entire paper is:

http://jcp.bmjjournals.com/cgi/content/full/55/1/DC1?eaf

BBC Report

·        Last Sunday, the British equivalent of news program “60 Minutes” named

“Panorama”, aired and web streamed a documentary of the controversies and

the players.  In it, the producers announces their early possession of

Wakefield’s paper, due out next April in a peer reviewed medical science

journal.  Here is the RealPlayer-based web location for viewing the program:

http://news.bbc.co.uk/olmedia/cta/progs/panorama/latest.ram

 

Potential Viral Pathogenic Mechanism For New Variant Inflammatory Bowel

Disease

V Uhlmann*, C M Martin*, O Sheils, L Pilkington, I Silva, A Killalea, S B

Murch, A J Wakefield, J J O’Leary

J Clin Pathol: Mol Pathol 2002; 55: 0± 6

 

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 reac-tion (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 lym-phocytes 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 patho-logy in children with developmental disorder.  A n apparently new form of immune mediated inflamma-tory bowel disease in a cohort of children with develop-mental disorder has been described. 1 The intestinal pathology includes ileocolonic lymphonodular hyperplasia and non-specific colitis, which manifests as neither Crohn’s disease nor ulcerative colitis.

The histological and clinical aspects of this new disorder have been reported previously. 2 It has been postulated that reactive follicular hyperplasia in ileal tissue biopsies of affected children may reflect the persistence of viral antigen at this site. 2 Preliminary immunohisto-chemicaldata suggested the presence of measles virus (MV) antigen in the extracellular matrix of the midgut mucosal lymphoid tissue in affected children. 2 MV belongs to the family of single stranded paramyxovi-ruses.

It is the causative agent for several diseases including subacute sclerosing panencephalitis (SSPE) and measles inclusion body encephalitis. 3 Measles ranked as one of the leading causes of childhood mortality in the late 20^th century. 4 In developing countries, 1 million deaths each year are related to MV infections.

“Measles virus is the causative agent for several diseases including

subacute sclerosing panencephalitis and mea-sles inclusion body

encephalitis”

Our study examines a possible association between MV and the above condition. To achieve this aim, several molecular biological techniques have been used to identify, localise, and measure MV from terminal ileum biopsies in children with ileocolonic lymphonodular hyperplasia and developmental disorder.

 

 

 

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Consumer Electronics Show – Neat Gizmos for Autism

[Some of the fancy stuff can be helpful for matters autism.  Excerpted

from Fortune Magazine, Peter Lewis On Technology. Copyright 2002]

http://www.fortune.com/indexw.jhtml?channel=artcol.jhtml&doc_id=206066

The economy may be dormant, but the imaginations of the world’s gizmo and gadget inventors remain fertile. Perhaps too fertile, judging from some of the goofy products at this year’s Consumer Electronics Show in Las Vegas.  Take Digital Cookware’s Smart Pan, the world’s first digital skillet, with an LCD temperature display in the handle. Or Casio’s prototype wristwatch camcorder, which can capture and show up to a few seconds of low-quality video. (Hey, it’s just a prototype.)

CONVERGENCE PRODUCTS

The Danger Research Hiptop was easily the show’s coolest gizmo (www.danger.com). It’s a lot of fun, but it’s also a brilliant handheld communications and information device. It’s a full-featured wireless phone, as well as a portable Internet terminal with a continuous connection to the Net, with true HTML Web browsing (not crummy little clippings), e-mail (with attachments), and instant messaging (including AOL’s version). The monochrome LCD display screen flips open switchblade-style, revealing a keypad. It’s a personal information manager, an MP3 music player, and a handheld game console. With an optional attachment, it’s also a digital camera. Offered by wireless phone carriers beginning this summer, the Hiptop is expected to cost just $200, plus a monthly service fee.

VIDEO / PHONES

Plantronics’ prototype M1500 Bluetooth headset achieves the paradoxical feat of cutting the wires on wireless phone headsets. The M1500 consists of an over-the-ear microphone and speaker, and a Bluetooth wireless networking dongle that attaches to your Nokia mobile phone (other phone brands are in the works). Once attached, the M1500 allows the user to talk on the phone even if the phone is still in a briefcase or pocket, up to 30 feet away.

[This technology brings with it the application of remote monitoring, which will be one of those advances that will radically re-arrange how people do things.  For families with autism, this allows you to keep a remote eye on your child in his home program, with a babysitter, at school, etc.  Think of the freedom it will give parents to be able to get away, yet still be at home. –LS.]

COMPUTERS

And finally, I was entranced by the first consumer model of Xybernaut’s portable multimedia appliance, called Poma (www.xybernaut.com).  It’s a wearable, Windows CE-based computer connected to a head-mounted display, the kind that would fit right in at a Star Trek convention, and operated by a clever optical mouse-on- a-stick. A transparent, VGA-quality display screen hovers, holographically, in front of one of the user’s eyes, where it doesn’t impede normal vision. Xybernaut has been building powerful, expensive versions of these wearable computers for the military-industrial complex for years, but now thinks there will be consumer demand for the $1,500 package. Seeing a demonstration of how Xybernaut’s technology has been used to help children with autism, dyslexia, and other disorders was inspirational.

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Action Alert: Texas Governor Drags Feet on Appointments for Autism

[This Bulletin from Ronnie Schleiss of the Autism Society of Greater Austin.]

Parents in Texas: The Texas legislature signed into a law, last legislative session, a bill that changed the make up of the Interagency Council for Autism and PDD’s so that it would be more productive. However, our governor has failed to make the necessary appointments to this council, which should have been completed by 9/1/01. As a consequence this council is not operating in any capacity, that we can identify.

Please call the governor’s office and ask to speak to AMY IRVING 512-463-1828) and ask why the Govenor has not made the appointments this to very important council - tell them it is the only legislative voice for families with autism in Texas. If you do contact the governor’s office please e-mail w/ your name and the date you called. Ronnie Schleiss, Pres., Autism Society of Greater Austin (dschleiss@austin.rr.com).

 

 

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Toronto Parents Demand Improved Services For Autistic Children

Families frustrated as long waiting lists plague $39 million Ontario program

[By Patricia Orwen in The Toronto Star Copyright © 2002.]

http://www.thestar.com/NASApp/cs/ContentServer?pagename=thestar/Layout/Artic

le_Type1&c=Article&cid

Little Nadia’s forehead is covered in bumps and bruises. And they weren’t inflicted accidentally.

Like many children who suffer from a neurological disorder known as autism, the 2-year-old Toronto toddler has no way to communicate. She repeatedly bangs her head against the wall in frustration.

Two years ago, the province allotted $19 million for treatment to help children like Nadia improve their speech and social skills. Last spring, it more than doubled that amount to $39 million. Today, Nadia’s family is among many wondering why, with all that money, the waiting  list for treatment in Toronto can be several years long, and when the  child reaches age 6, that funding is abruptly cut off.

“I’ve been told she’s number 580 on a list of 600 and two years is a typical wait,” says Nadia’s mother, Marianna Ofner-Agostini.

“That’s time we just can’t afford to take.... We’ll just have to remortgage our house to pay for it ourselves ... it’s senseless and frustrating.”

Ofner-Agostini and others are demanding that Ontario’s Intensive Early Intervention Program for Children with Autism provide faster  service and continue that service beyond age 6.

Autism is a neurological disorder that affects several thousand children in Ontario. Autistic children typically have difficulty with speech and are often unable to learn even simple tasks.

The therapy in use in Ontario is known as applied behaviour analysis.  Pioneered in the United States by Dr. Ivar Lovaas more than 30 years  ago, it involves intensive sessions in which a therapist repeatedly  reinforces appropriate behaviour, language and social skill with the  child. Autistic children generally need two or three years of such  therapy, which costs between $45,000 and $80,000 a year.

Clovis and Sherron Grant filed a complaint with Ontario’s ombudsman last week after being told that they could not expect to get treatment  for their 5-year-old son Isaiah because their service provider, the  Toronto Preschool Autism Service, told them that it can’t get any money  from the government. Isaiah has spent 13 months on the waiting list. His  parents say they were told he is number 339 of 600.

“We have lost hope for our child receiving the early intervention that has been talked about so many times by your government ... we feel deceived and let down by your department,” the Scarborough couple wrote  in a recent letter to John Baird, the minister of community and social services.

Last Thursday, Norrah Whitney, who is the mother of a 6-year-old autistic boy, filed a written request with provincial auditor Erik  Peters to audit the autism program to determine whether the taxpayer’s  money is being spent wisely. Whitney also filed a similar request with  the ombudsman.

Whitney has already filed a complaint of discrimination on her son’s behalf with the Ontario Human Rights Commission. In her complaint, Whitney states that the government has violated her son’s rights by failing to provide him with a medically necessary treatment.

When he was 5, Whitney’s son, Luke Burrows, was given 30 hours a week of intensive one-on-one behaviour therapy under the government-funded program. He learned words, then phrases. And he began feeling  comfortable socializing. Now that he is 6, however, that funding will  not continue.

“He’s not ready to go to school,” says Whitney, a single mother who works part-time.

“He needs to keep up this treatment in order to develop his speech and social skills.”

In an interview with The Star, Baird said that Ontario is doing more than any government in Canada for autistic children.

“I don’t pretend that we are going to be able to meet every need, but we’ve gone from spending nothing three years ago to $19 million two  years ago and then we doubled that funding ... I can’t think of any  other program where we doubled funding in one year,” Baird said, adding  that he knew of only 55 children waiting for treatment in Toronto.

Ofner-Agostini, however, says this kind of thinking is shortsighted.  “If Nadia receives treatment before the age of 5, for a period of one to two years, she has a high probability of living a normal life. By spending now, the government is saving millions of dollars in the future. If these children are not treated now, they will need aides when they enter school and they may have to be placed in group homes or institutions later.”

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Buying, Breaking Bread for Autism Research

6,000 Supermarket In-Store Bakeries Nationwide Participate

[From Karen E. Lippold klippold@cureautismnow.org at CAN. I wonder if they could whip up some glutin-free?  -LS]

Just by purchasing a loaf of California Goldminer Sourdough bread, food shoppers across the U.S. will help find a cure for autism.

An innovative partnership between Cure Autism Now and Maple Leaf Bakery begins Feb. 4 and runs through April 5, 2002.  During the promotion, the purchase of California Goldminer Sourdough Bread, sold in 6,000 supermarket in-store bakeries nationwide, will help fund a Cure Autism Now scientist for one year.

Participating supermarkets nationwide include A&P, ACME, Albertson’s, Bi Lo, Big Y, City Market, Fred Meyer, Fry’s, Giant Food Stores, Hannaford Food & Drug, H.E. Butt, Hy-Vee, King Soopers, Kroger, Rainbow, ShopRite, Shop ‘n Save, Smith’s, Super G, Tops Friendly Markets, and Wal Mart Supercenters.

Rick Anderson, Vice President, Marketing and Retail Sales, Maple Leaf Bakery, was instrumental in implementing this promotion.  “As the father of an autistic child, my family and I have first-hand experience with the daily dealings of having a child with autism.  While my son improves everyday, it is important to continue to support groups such as Cure Autism Now who are constantly working to find a cure and effective treatments.  We are proud to donate proceeds from California Goldminer Sourdough to fund a scientist’s work for one year.  We hope to make our relationship with Cure Autism Now a long-lasting one,” Anderson said.

Look in your supermarket bakery for the distinctive wagon and shelf displays.  Colorful signs there promote Cure Autism Now and information about autism.  Support this corporate effort to shed light on Autism research and awareness.

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Reader’s  Posts

New Gingerbread support group in Winchester, Hampshire for single parent

families and many of us have autistic spectrum children (some vaccine

damaged).  If you are down and feeling isolated why not come along? Vanessa

Having a very difficult time getting any services for my 5 year old son from

the school district (Kewanee, Illinois). He has high functioning autism and

they have repeatedly refused all my requests and I am at a loss as to what

Spring Gate School in Wilton Manors, Florida is looking for an extra PC

computer for their growing classroom.  Our school is a small not for profit,

private school for special needs children, started by a special mom of an

autistic child.  If any individual or company has a PC they could donate we

can provide a tax deductable receipt (and our undying gratitude!).

San Rafael/Marin seeking other families with autistic/asperger/HFA kids around 7-10 years old for “after school club” with 2-3 HFA/Asp/NVLD kids and 1-2 Neuro-typical peers for recreation and socialization opportunities with aquality positive behavior reinforcement component. I am creating a program.

Have some funding lined up.  Will have 2 or more good staff Need to get this

San Rafael/Marin, CA. Seeking to create database of Autistic/Asperger/NVLD

kids/families for the purpose of community, activities, activism with local

SELPA for appropriate programs. Email me if you will be in database.  Will

email back what info is needed with your choice as to how much info you wish

to divulge and whether to share it.  Sally Kirk 415-491-1709,

Am studying my masters of education in special education, behaviour

management and counselling and an additional diploma in alcohol & other

drugs. Please forward any relevant information, publications, research etc

Need info on adult autism programs & services in Calif., New Mexico, Florida, and/or Arizona for my 30 yr old autistic son.  Considering moving.

Anyone with any other important information, contact me.  Email not

available, so write or call at:  Arlene Labrasca (520) 387-4002 (evenings

 

 

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