Nids

Anyone watching NBC Today?? Willard scott brung up Autism awarness month
and said 20 years ago you didn't hear much about Autism and now their is
an epadimit. Lois

Hi. I just had my monthly conference call with Goldberg yesterday, and we were
discussing how my son, even after 4 years of his regimine, is still not "tuned
in and bright eye". He still has poor attending skills, despite a full time ABA
program, and is very much still into his own world and thoughts. He is 6, and
you can still talk about him with him right there in the room with you and he
doesn't seem to even notice. He has gained leaps and bounds in the academic
category, but is still self absorbed and can't stay focused. He also stims/or
tics alot.
Goldberg suggested Wellbutrin. He said it should improve focus. Our son is
already on the usual Goldberg stuff, SSRI, antifungal, antiviral, and even
Kutapressin.
Has anyone else had him prescribe this for their child? I can't help but wonder
why, if it is so great and will improve attention and focus, has he not
mentioned it before now. We have been seeing him for 4 years and our son has
always had an attention problem.
Any advice?
Trina

PLEASE UNSUBSCRIBE US FROM THIS
NOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
THANK
YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

PLEASE UNSUBSCRIBE US FROM THIS NOW!!!!!! THANK
YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I guess one way to check for this is to send a test email to yourself and
see if it has the attachement?

I read the following e-mail from my friend after I had already tried to open
the file. My sincere apologies if this causes problems for you.
Warren Anderson
A couple weeks ago, I received via email a file that sent itself. Once it
was on the system of the person from whom I received it, it attached itself
to all those in his address book, including me. I downloaded it, tried to
open it, unsuccessfully as it turned out. So, I dumped it. I learned later
that day that it was a virus; and since I had disposed of it I didn't think
about it.
Now, I have begun to receive a few emails from people who are part of my
address book. Evidently, some of you have fallen victim to the same thing.
The virus attached itself to your email address and sent itself to you (I
received a message back from someone who is in my book but whom I have not
emailed for perhaps 9 months).
The name of the file is CoolProgs\PrettyParks.exe. According to a friend of
mine who knows just about everything about computers, this virus (if you have
downloaded it and tried to open it) will connect with those on your email
just as it did with mine. Here is what he told me: "For about the first half
hour after it gets on your machine it tries to send itself to everyone on
your local email address list." His instruction was this: "[You} will need
to clean your system. It
doesn't just replicate itself, it also attaches itself to every EXE program
file you launch."
In other words, if you have received this file, DO NOT OPEN IT. DO NOT
DOWNLOAD. DUMP IT. If it is too late, you will need to run a virus scan and
clean your system.
Sorry about having to bear this news!

Hello, Please pass the following link on. Thanks.
<A HREF="http://www.iqonline.net/murphy/bradley/services.htm"
Services Information Form</A
http://www.iqonline.net/murphy/bradley/services.htm
Please help us help our son and other children who receive special education
services in Lapeer County, Michigan.
If your child is receiving special education services, please take a few
moments to fill out the following form. I am investigating my son's school
district for severe non-compliance with the IDEA '97 law and Michigan State
Special Education Regulations. I would like to find out the extent of
services being provided to children with special needs in other school
districts in Michigan and around the U.S. The information collected will be
used in our lawsuit against our school district and will also be used to
educate our community about the lack of services provided here. Although I
do not intend to publish any names, I need to know at least a parent name and
e-mail address for validity of the information provided. I know I am asking
a lot but please help. This will not only help Bradley but hopefully will
help all of the special education students in Lapeer County, Michigan. Thank
you so much for taking the time out to fill out the form. Please click
on the link at the top of this e-mail to access the form.
Kim Murphy
KimKim1123@... Please fax any relevant information to my E-fax number:
801-659-6939

Hi, in case anyone has access to C-Span2, you might have another
opportunity to tape the hearings. This came across one of my other lists.
Cheryl
The hearing will be repeated April 19, 2000 at 4:00 pm Eastern on C-SPAN2.
We just found out that the hearing will be repeated and had told many that
it would not. It you could pass this information on to others who would be
interested it would be appreciated.
Thank you for your interest,
Viewer Information

Hello, Please pass the following link on. Thanks.
<A HREF="http://www.iqonline.net/murphy/bradley/services.htm"
Services Information Form</A
http://www.iqonline.net/murphy/bradley/services.htm
Please help us help our son and other children who receive special education
services in Lapeer County, Michigan.
If your child is between the ages of 3 and 7 and is diagnosed with
developmental delay w/autistic tendancies, pdd/nos or autism please take a
few moments to fill out the following form. I am investigating my son's
school district for severe non-compliance with the IDEA '97 law and Michigan
State Special Education Regulations. I would like to find out the extent of
services being provided to children with needs similar to my son's in other
school districts in Michigan and around the U.S. The information collected
will be used in our lawsuit against our school district and will also be used
to educate our community about the lack of services provided here. Although
I do not intend to publish any names, I need to know at least a parent name
and e-mail address for validity of the information provided. I know I am
asking a lot but please help. This will not only help Bradley but hopefully
will help all of the special education students in Lapeer County, Michigan.
Thank you so much for taking the time out to fill out the form. Please click
on the link at the top of this e-mail to access the form.
Kim Murphy
KimKim1123@... Please fax any relevant information to my E-fax number:
801-659-6939

Let's hope this proceedure works. Recently a family member's obstruction
had to be removed by surgery. By her symptoms and complaints, she had this
for 6 years before the doctors finally admitted it was not "in her head".
(which they had been telling her all that time). By the time of the surgery,
3 feet of bowel had become so diseased it had to be removed with the
obstruction. Yes, she had been persistant. And now they are getting a
lawyer. 6 years of suffering was unneccessary. Best wishes..

please remove me from the list. i am not sure how i ended up on it.
thanks.

Cutting a very long story short as possible, please bear with me and read as
this could happen to you too;
talk about ''dont trust doctors'' ; here's what happened; The local
hospital; I write to(copy to solicitor) demanding an x-ray of sons' bowels
as suspect 'impacted gut' ....over a year ago the same doctor
(gastroenterologist, paediatric) said ''he cannot possibly have an impacted
bowel''
x-ray we get it
given various goo which son refuses (every trick in book tried) then an
expert from a famous hospital see's my son (Jamie aged 7), can see he is
severely handicapped. We discuss how my son can detect the slightest changes
in food or juice and we cannot get medicine into him. It is sadly agreed
that he will have to be admitted, be put under sedation for a 'clear-out'
and then approx. one month later (??????!!) AGAIN to be admitted for various
'tests' . We are to wait for an admissions letter for 'soon as possible'.
Two weeks later, a nurse calls and says our kid should have been admitted
that night
he screwed up and says sorry, nurse then says...'he can come in tomorrow
then', I said 'no' I needed a few days to organise things, and he wasn't
coming in without a letter confirming he was coming in (as am a bit
suspicious by now) and by the way, precisely what is going to happen to my
little boy? ''we're going to give him a medicine disguised in juice, he wont
be able to taste it''
SHE replies 'yeah, why cant you?' blah
almost get struck-off register
'medicine' to the Pharmacy at 'Boots' whom call me and seem a little
concerned. Eventually we get the medicine, it is called 'Klean-Prep' and is
for 'bowel-cleansing' pre colonoscopy (oh by the way, the specialist doctor
from the hospital had said it would not be possible to tell me precisely
WHAT tests would be performed on my child as 'every child is so different')
Here comes the scariest part;
On the packet of this 'Klean-Prep' it says ' Dissolve the contents of one
sachet in in 1 litre (1 3/4 pints) of water then drink this over 1-1 1/2
hours. Repeat for remaining sachets' (6-8 times per day)
tells me that this sounds odd for little boy of 7 (even for an ordinary
kid)...
to dissolve it in *150mls* of water (the doctor and nurse had said juice was
okay too). Add it up. This is a small lad of 7. With severe handicaps.
Non-verbal. Family and friends reactions? 'Are they trying to kill him or
WHAT??!!!!'.....If anyone can enlighten me me as to what the hell to do, I
would be grateful, as I am very, very upset and have completely lost ALL
faith in the medical profession. (what if I had given this medicine to my
son and his kidneys had failed
when on 'ecstasy' for example? Or the solution being TOO STRONG could have
killed him? a possibility my son could have DIED!)....please never be
scared to challenge these people.
Looking forward to any enlightenment before I visit the
newspapers/lawyers/both.
Best wishes
Liz Lucy.

In a message dated 04/15/2000 5:56:08 AM Central Daylight Time,
jsigallias@... writes:
<< please unsubscribe

please unsubscribe

Just want to hear some thoughts on this bill.
Autism Statistics, Surveillance, Research, and Epidemiology Act of 1999
(ASSURE) (Introduced in the House)
HR 274 IH
106th CONGRESS
1st Session
H. R. 274
To provide surveillance and research to better understand the prevalence
and pattern of autism and other pervasive
developmental disabilities so that effective treatment and prevention
strategies can be implemented.
IN THE HOUSE OF REPRESENTATIVES
January 6, 1999
Mr. SMITH of New Jersey (for himself and Mr. GREENWOOD) introduced the
following bill; which was referred to the
Committee on Commerce
A BILL
To provide surveillance and research to better understand the prevalence
and pattern of autism and other pervasive
developmental disabilities so that effective treatment and prevention
strategies can be implemented.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress
assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the `Autism Statistics, Surveillance,
Research, and Epidemiology Act of 1999 (ASSURE)'.
SEC. 2. FINDINGS.
The Congress makes the following findings:
(1) Autism and other pervasive developmental disabilities
(fragile X syndrome, Rett's syndrome, childhood
disintegrative disorder, Landau-Kleffner syndrome, and
pervasive developmental disorders not otherwise
specified) are biologically based neurodevelopmental diseases
which cause severe impairment in cognition,
language, and affective abilities.
(2) Autism and pervasive developmental disabilities are not
rare; they may affect as many as one in every 500
children, and more than 500,000 Americans.
(3) There is little information on the prevalence of autism
and other pervasive developmental disabilities in the
United States. There have never been any national prevalence
studies in the United States, and the two studies
that were conducted in the 1980s examined only selected areas
of the country. Recent studies in Canada, Europe,
and Japan suggest that the prevalence of classic autism alone
may be 300 percent to 400 percent higher than
previously estimated.
(4) The cost of caring for individuals with autism and
pervasive developmental disabilities is estimated at more than
$13,000,000,000 per year for direct costs only.
(5) Autism is considered by many scientists to be one of the
most heritable of all the developmental disorders, and
the most likely to yield to the latest scientific advancements
in genetics and neurology.
(6) The discovery of effective treatments and a cure for
autism will be greatly enhanced when scientists and
epidemiologists have an accurate understanding of the
prevalence and incidence of autism .
(7) Recent research suggests that environmental factors may
contribute to autism . As a result, contributing causes
of autism , if identified, may be preventable.
(8) Finding the answers to the causes of autism and related
developmental disabilities may help researchers to
understand other disorders, ranging from learning problems, to
hyperactivity, to communications deficits that affect
millions of Americans.
SEC. 3. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND RESEARCH PROGRAMS.
(a) NATIONAL AUTISM AND PERVASIVE DEVELOPMENTAL DISABILITIES
SURVEILLANCE
PROGRAM- The Secretary of Health and Human Services (in this Act
referred to as the `Secretary'), acting through the
Director of the Centers for Disease Control and Prevention, may
make awards of grants and cooperative agreements for
the collection, analysis, and reporting of data on autism and
pervasive developmental disabilities. An entity may receive
such an award only if the entity is a public or nonprofit private
entity (including health departments of States and political
subdivisions of States, and including universities and other
educational entities). In making such awards, the Secretary
may provide direct technical assistance in lieu of cash.
(b) CENTERS OF EXCELLENCE IN AUTISM AND PERVASIVE DEVELOPMENTAL
DISABILITIES
EPIDEMIOLOGY-
(1) IN GENERAL- The Secretary, acting through the Director of
the Centers for Disease Control and
Prevention, shall (subject to the extent of amounts made
available in appropriations Acts) establish not less than
three, and not more than five, regional centers of excellence
in autism and pervasive developmental disabilities
epidemiology for the
purpose of collecting and analyzing information on the number,
incidence, correlates, and causes of autism and related
developmental disabilities.
(2) RECIPIENTS OF AWARDS FOR ESTABLISHMENT OF CENTERS- Centers
under paragraph (1) shall
be established and operated through the award of grants or
cooperative agreements to public or nonprofit private
entities that conduct research, including health departments
of States and political subdivisions of States, and
including universities and other educational entities.
(3) CERTAIN REQUIREMENTS- An award for a center under
paragraph (1) may be made only if the entity
involved submits to the Secretary an application containing
such agreements and information as the Secretary may
require, including an agreement that the center involved will
operate in accordance with the following:
(A) The center will collect, analyze, and report autism
and pervasive developmental disabilities data
according to guidelines prescribed by the Director, after
consultation with relevant State and local public
health officials, private sector developmental disability
researchers, and advocates for those with
developmental disabilities;
(B) The center will assist with the development and
coordination of State autism and pervasive
developmental disabilities surveillance efforts within a
region;
(C) The center will provide education, training, and
clinical skills improvement for health professionals
aimed at better understanding and treatment of autism and
related developmental disabilities; and
(D) The center will identify eligible cases and controls
through its surveillance systems and conduct research
into factors which may cause autism and related
developmental disabilities; each program will develop or
extend an area of special research expertise (including,
but not limited to, genetics, environmental exposure
to contaminants, immunology, and other relevant research
specialty areas).
SEC. 4. CLEARINGHOUSE.
The Secretary, acting through the Director of the Centers for
Disease Control and Prevention, shall carry out the
following:
(1) The Centers for Disease Control and Prevention shall serve
as the coordinating agency for autism and
pervasive developmental disabilities surveillance activities
through the establishment of a clearinghouse for the
collection and storage of data generated from the monitoring
programs created by this Act. The functions of such
a clearinghouse shall include facilitating the coordination of
research and policy development relating to the
epidemiology of autism and other pervasive developmental
disabilities.
(2) The Secretary, acting through the Centers for Disease
Control and Prevention, shall coordinate the Federal
response to requests for assistance from State health
department officials regarding potential or alleged autism or
developmental disability clusters.
SEC. 5. ADVISORY COMMITTEE.
(a) IN GENERAL- The Secretary shall establish an Advisory Committee
for Autism and Pervasive Developmental
Disabilities Epidemiology Research (in this section referred to as
the `Committee'). The Committee shall provide advice
and recommendations to the Director of the Centers for Disease
Control and Prevention on--
(1) the establishment of a national autism and pervasive
developmental disabilities surveillance program;
(2) the establishment of centers of excellence in autism and
pervasive developmental disabilities epidemiology;
(3) methods and procedures to more effectively coordinate
government and non-government programs and
research on autism and pervasive developmental disabilities
epidemiology; and
(4) the effective operation of autism and pervasive
developmental disabilities epidemiology research activities.
(b) COMPOSITION-
(1) IN GENERAL- The Committee shall be composed of ex officio
members in accordance with paragraph (2)
and 11 appointed members in accordance with paragraph (3).
(2) EX OFFICIO MEMBERS- The following officials shall serve as
ex officio members of the Committee:
(A) The Director of the National Center for Environmental
Health.
(B) The Assistant Administrator of the Agency for Toxic
Substances and Disease Registry.
(C) The Director of the National Institute of Child
Health and Human Development.
(D) The Director of the National Institute of
Neurological Disorders and Stroke.
(3) APPOINTED MEMBERS- Appointments to the Committee shall be
made in accordance with the following:
(A) Two members shall be research scientists with
demonstrated achievements in research related to autism
and related developmental disabilities. The scientists
shall be appointed by the Secretary in consultation
with the National Academy of Sciences.
(B) Five members shall be representatives of the five
national organizations whose primary emphasis is on
research into autism and other pervasive developmental
disabilities. One representative from each of such
organizations shall be appointed by the Secretary in
consultation with the National Academy of Sciences.
(C) Two members shall be clinicians whose practice is
primarily devoted to the treatment of individuals with
autism and other pervasive developmental disabilities.
The clinicians shall be appointed by the Secretary in
consultation with the Institute of Medicine and the
National Academy of Sciences.
(D) Two members shall be individuals who are the parents
or legal guardians of a person or persons with
autism or other pervasive developmental disabilities. The
individuals shall be appointed by the Secretary in
consultation with the ex officio members under paragraph
(1) and the five national organizations referred to
in subparagraph (B).
(c) ADMINISTRATIVE SUPPORT; TERMS OF SERVICE; OTHER PROVISIONS- The
following apply with
respect to the Committee:
(1) The Committee shall receive necessary and appropriate
administrative support from the Department of Health
and Human Services.
(2) Members of the Committee shall be appointed for a term of
three years, and may serve for an unlimited
number of terms if reappointed.
(3) The Committee shall meet no less than two times per year.
(4) Members of the Committee shall not receive additional
compensation for their service. Such members may
receive reimbursement for appropriate and additional expenses
that are incurred through service on the
Committee which would not have incurred had they not been a
member of the Committee.
SEC. 6. REPORT TO CONGRESS.
The Secretary shall prepare and submit to the Congress, after
consultation and comment by the Advisory Committee, an
annual report regarding the prevalence and incidence of autism and
other pervasive developmental disorders, the results
of research into the etiology of autism and other pervasive
developmental disorders, public health responses to known or
preventable causes of autism and other pervasive developmental
disorders, and the need for additional research into
promising lines of scientific inquiry.
SEC. 7. DEFINITION.
For purposes of this Act, the term `State' means each of the
several States, the District of Columbia, the Commonwealth
of Puerto Rico, American Samoa, Guam, the Commonwealth of the
Northern Mariana Islands, the Virgin Islands, and
the Trust Territory of the Pacific Islands.
SEC. 8. AUTHORIZATION OF APPROPRIATIONS.
For the purpose of carrying out this Act, there is authorized to be
appropriated $7,500,000 for each of the fiscal years
2000 through 2004.

Hi Ya'all,
One of my husband's automotive repair customers is moving to Maine. she is
a psychologist, who will be developing behavioral plans for children with
autism in Maine.
Can anyone give me some good contacts for educational and behavioral info in
that state? I hve plenty of info to give her, but some local contacts who
know what they are doing would be very helpful!
Thanx,
Tina hendrix

I used to be involved in care giving stress research. I published one paper on
the subject that still get quoted now & then. But you have to take it with a
grain of salt. Sure providing care to a disabled love one cause stress but what
is the alternative sending them to a nursing home might cause more stress. Of
course it would be nice to have better and more accessible in home health
services.
Steve

Please unsubscribe.

Hal,
I kept getting "incorrect address" when I went to http://www.house.gov to
find the transcripts of the testimony before congress----is this the right
address?
Thanks
Kate

In a message dated 4/13/00 1:48:04 AM Pacific Daylight Time, NIDS@egroups.com
writes:
<<
Vicki
Where did you learn that serenaid contained mold? The bottle says it
contains:
exorphinase (proprietary enzyme blend)
L-lysine
papain
lactase
And "other ingredients" are gelatin, rice bran, and water.
Kate
Kate,
I forgot who made me aware of this...but my DAN! (Dr. Smith) backed me..he
believes it was the mold that brought on a seizure in one of his patients.
It's in the processing...so you won't find it on the label...
Vicki

For those who have requested tapes!!
I have heard that ARK - The Autism Resource Konnection - the group that put
on the rally - will possibly have in the near future an Official tape of the
Hear~Their~Silence Rally for National Autism Awareness - - - through their
ARK store. Yeah!!!!
I encourage everyone to stay tuned to the ARK website to purchase an
official copy. Mine will just be my personal copy. They will, I
understand, be splicing my tape, Kim's tape, and any other tape they receive
into a complete package of the best of all our combined tapes!! Check with
them for details!!
So - there you have it!! Stay tuned for an official ARK tape coming soon
to www.ark-inc.org !!!! 1-877-on-autism
I still have the names of rally friends that asked for a tape - to give a
quick personal copy to - but I encourage others - if you can wait - the ARK
one will be much much better!!!
Michelle Guppy

I want to make sure I'm thanking the good guys - I know the obvious ones,
but some of these names I'm not too familiar with. Please someone indulge
me with the good one's names and how to contact them.
I appreciate it!
I'm not familiar with some of the names.
I want to send a letter of thanks to the good guys.
And do you have mailing addresses???
Dr. Wayne M. Dankner
Professor John O'Leary
Dr. Singh
Dr. Wakefield
Dr. Paul Offit
Dr. Brent Taylor
Dr. Rimland
Dr. Goldberg
Dr. Roberto Tuchman
Dr. Mary Megson
Dr. John Upledger
Dr. Edward Cook
Please let me know which were the good guys and how I might mail them a
thank you letter!
Thanks!
If you would E-mail me privately, I will post back the names and addresses I
gather so that we all might write in our thanks.
Also, do you have a name and a mailing address for a specific department to
write to in the CDC and NIH to urge them to study autism more closely? Who
are the key players in both those organizations that I should direct
comments to.
Thank you,
Michelle Guppy
tguppy@...

To read transcripts of the congressional committee
testimony on autism and vaccines , go to
http://www.house.gov, click on "committee offices",
then do a search on the word "autism".
Regards
Hal Rounds

I get your letter through the NIDS list.

April 11, 2000
Could you take a minute and let me know how you came to hear of our
newsletter?
Our subscriptions are free and we are all volunteer.
Lately our rolls have been booming and we'd like to find out what we're
doing right!
Lenny Schafer
Izak's dad
editor
FEAT Daily Newsletter

get a religious exemption. dont take the chance

My doctor (MD, environmental medicine) instructed me to give my kids one
capsule with each meal; the instructions on the bottle say it's optimal to
give at the beginning at the meal,so that's what I do. I have not noticed
any hyperness or sleepness, only improvement in:
1. bowel movements more "normal"
2. less verbal self-stim
Kate

I for one would appreciate knowing when "the documentary" will be aired.
There were so many memorable moments over those three days: Press
conference, hearing, receptions and rally. I hope someday I told Shelly
Reynolds' husband the quits, photographs and perhaps our children's inanimate
object collection (an idea of mine) find themselves in the Smithsonian
Institution in Washington, D. C., after touring the country to raise funds
for autism research. The day of the rally was one to treasure and remember
always. The look on Congressman Dan Burton's face when my son gave him his
"secret handshake" and the one on my oldest son's face when he saw his
photograph on the picture board are two I shall keep forever in my heart.

Hi again,
Now I have a question about vaccinations. My 6 yr old is autistic, so no more
vaccines ever for him. But, I have a 21 month old who I have sparingly given
some of the vaccines, but not the dreaded MMR. I had my pediatrician order the
M, M, and R separately. He did and has told me he has them ready. I have read
that you should just not given them at all, or at least do it individually
instead of all together.
Has anyone done them separately? If so, how far apart do they need to be given?
Thanks,
Trina

Kentucky Gymnastics Academy would like to invite Louisville area familes
for an open gym for families of children with autism.
The open gym will be Saturday, April 22, from 6:00 p.m. - 7:30 p.m. The
fee is $3 per child. Siblings are invited.
Join us for a fun evening of jumping, swinging, and rolling!
For more information contact Tina Salameh at
tsalameh@... or by phone (502) 253-1234.

Hi all,
For those of you who use the serenaid, I have a couple of questions. First, do
you give daily, or just when your child eats some gluten?? If you give only
when gluten has been consumed, do you just give it with or right after that
meal, meaning one dose, or do you give it for a day or so to make sure you are
covering your bases? Also, does anyone notice that if it is given at the last
meal or snack for the night, your child wakes up earlier or is more hyper?
thanks,
Trina

Autism 2000 Houston Conference May 18-19!!!!
There is a huge conference put on by Future Horizons - Continuing Education
Credits offered!
Contact the number below for a brochure, or me - I have many I can mail out
to any groups you think might be interested!!
R. Wayne Gilpin will be the conference moderator.
Keynote Speakers:
Temple Grandin
Dr. Lisa Lewis
Presentations on:
Toilet Training
Sleep Problems
Social Skills
Developing Speech
Inclusion Strategies
A great conference for: Teachers, Psychologists, OT's, Speech Therapists,
and of course - Parents!
Conference site: Houston Marriott North at Greenspoint - conference
attendee's have free shuttle from Houston Intercontinental Airport - Hotel
has swimming pool, and is next to a shopping mall - reduced rates of $99.00
if reservations are made by May 1st. Call 1-281-875-4000 and ask about the
Autism Conference rates.
CALL 1-800-489-0727 FOR REGISTRATION INFORMATION
FUTURE HORIZONS:
721 W. ABRAM ST
ARLINGTON, TX 76013
817-277-0727
check out their website at www.futurehorizons-autism.com
Thank you and I hope to see you at the conference!!
Michelle Guppy
tguppy@...

This is what I would have said at the rally, a bit different than my
original "Thank You".
You all will understand this better after you read it - but this is
especially for my dear "warriors" of autism - you all mean the world to me -
keep fighting!!
Michelle Guppy
*************
For the parents, professionals, physicians, and members of Congress
attending this rally, I want to thank you for taking the time and making the
sacrifices in order to be here today. I wanted to also reiterate a
powerful statement made last year at a hearing on Autism. In her 1999
testimony to Congress, actress Rene Russo said, "This is War" referring to
the need for more awareness and help. This is a war for awareness that
everyone living with Autism must win. We parents have been on the
battlefield for quite some time. We are drained from the tears and the
financial burden......we are bruised from the hurt and anger of having no
answers.......and we are tired from the resistance on every issue we face.
We need reinforcements in terms of more awareness, grants, programs, and
research, to help those with autism reach the highest potential they can.
As an Autism Community, our united front on these issues can be the most
"Lethal Weapon" we have in achieving the victory we need for National Autism
Awareness, and the future of those affected by Autism.
So this is simply a tribute to those who are making each day with Autism
the best it can be, but who will never, never, surrender to Autism itself.
-
This is for all the Bernard Rimlands - those who have devoted their lives to
putting behind us old myths and theory's of "refrigerator moms" and
replacing them with the new emphasis on the medical aspects of autism. This
is for all the Shelley Reynolds out there - women of great faith and sheer
determination to "Open a Nation's Eyes to Autism" by blazing new trails of
parent centered bio-medical research organizations to further the effort
started. This is for all the Victoria Beck's out there boldly "
Confronting Autism " by "Standing Up, and Speaking Out and Letting their
Voices be Heard" ------- in challenging the medical establishment and
pursuing what they believe are scientifically valid treatments for their
child. ---- It is for all the groups and organizations that have united
here today. ..... Those who have joined with us as one in order to raise the
awareness so high, that we will all individually benefit from it. ......So
that there will be enough funds to explore every issue, treatment, and
possible cause of Autism. ---- This is for all the Carol's with dreams of
greater Autism Awareness, inspiring and motivating other mothers that they
can make a difference. ---------This is for all the Joanne 's out there,
taking on yet another job by starting their own grass-roots efforts to
support each other and to raise awareness - like this rally.
..............This is for people like Nancy, who are helping to stitch the
pieces of autism together to benefit us all. ........ This is for all the
mother's who have devoted the last year to Autism and promoting this rally
for awareness. .......... You counted down for us, you counted hotel rooms
for us, and you counted your pennies in order to be here today. ...... You
are the ones who organized buses and fundraisers. Instead of folding
clothes, you were folding fabric to assemble ribbons. ....... You are the
ones who did not take no for an answer in talking to your newspapers and
media to do a story on Autism. ...............You took time - made time -
and stole time - - - to spread the word and raise the awareness to anyone
you could contact. ........... This is for those at home who couldn't be
a part of going to D.C., so instead you are there supporting us and
cheering us on. ......... This is for all the dad's who play a major role
in Autism. ..... Instead of running away from the responsibility, you are on
this journey with the rest of us trying to find your way. This is for all
the doctors, researchers, and professionals, who have taken us seriously.
You are truly few and far between! ............This is for all the list
moderators who started the discussion and support lists and news lists that
are really our biggest source of information, help, and support. ......
With the members on these lists.......without ever having met - one has the
sense of "family" that can only be understood by those who have been there
and done that.........you willingly and honestly share your information,
expertise, and advice, for all of us to use. ........... This is for the
unknown mothers of Autism out there struggling to cope with it all.
Mothers just like us. ................ Mothers turning their anger at
autism into awareness!! You are the women with unshaven legs,
..unfiled nails, ..and split ends. ........... You haven't been to the
doctor in years for yourself, but take your child to any doctor you can, in
hopes that they could help you in your attempts to get answers.
.............. You never remember to take your own vitamins - but yet you
never miss a day of your child's supplement regimen. ........This is for
the dad's who stop at the Health Food Store on their way home from work -
instead of the Healthclub. ............. This is for those who have
circles under their eyes, the mom's from being up all night preparing
IEP's, the dad's up all night simply trying to get their child to sleep.
.........This is for those who have no time for calling your friends,
because you are always on hold with your insurance company.
........... This is for those who have chosen to give up their careers, for
this new one called autism. ..............This is for the dad's, teaching
their son's life skills at home, instead of survival skills at camp.
.......... This is for the wives who have no time for late night movies
and intimate evenings, because you are spending precious time on your
computer, reading, searching, praying for answers. .............. And
this is for the husband's, who do understand. .......This is for the Sally
Meyer's out there, who write poems for us mom's like "One Hundred Tears"
"The Yellow Kite" and stories like "Liam's Journey" --- inspirations that
touch our heart and allow us to release the tears that cleanse our soul and
refresh us. .......... And this is for the dad's, who late late at
night, ....cry too. This is for the parent's that never give up their
fight, or their sense of humor: ..... The mom's who can laugh at having
a house with more locks than the pentagon. ........... And the dad's who
can laugh while they eat, yet another frozen dinner. .........This is for
those who have become a better person as a result of being on this
journey. .......... You have a deeper sense of appreciation for the
little things in life. ............... Each hard fought victory means
more. And each defeat makes you stronger. This is for the dad's
cheering their child on at therapy, instead of out on the field. This is
for the mom's doing the best they can to help their special needs child,
and trying to somehow make life as normal as possible for their typical
children. .......... You are exhausted from managing autism, ...along with
your career, ....your house, ...and your marriage. This is
especially for all those who have lost their marriages as a result of the
enormous pressure and strain of Autism. ............. And this is for
all the single parents, journeying alone. ......... This is for the
men out there who have the tools to fix anything in their house, but not one
to fix autism. .............. This is especially for the siblings of a
child with autism. .............. You are learning the most important
lesson of all........ That being different is O.K., and from that you will
become more compassionate and tolerant parents, professionals, and perhaps
politicians. ........... This is for those Angels in our lives that
God has put there to help us on our journey. ......... Be it the
relatives that don't really understand, but try to help as best they can,
......... the teacher who goes above and beyond, the therapist working
diligently trying to reach into your child's world, ........ the friend
that lends you her shoulder, ......... or the attendant that gives you an
afternoon off. ........ This is for the adults with autism - those
giving us glimpses into their lives, sharing their voices and experiences
with us - for when our children grow up. ...... This is for the parents
with a newly diagnosed child....we are here today so that your journey, may
be a bit easier. ............ This is for the international mom's out
there, we hope our echo here today, will reach your country, so you too, may
get the help you need. ............. Last but not least this is for each of
our children with Autism... of any age. You are the Wind Beneath our Wings
--- your smile and laughter lifting us up daily...giving us more Faith,
more Hope, and more Love. You are simply the ones who peacefully remind
us as we kiss you goodnight, that the true warrior in
Autism..............is the child.
From Michelle Guppy

Hello!
I have created a list called autism-awareness-action@egroups.com to go in
conjunction with the Autism Resource Konnection and Unlocking Autism - to
keep us up to date on future rallies and hearings. This will be a list to
be the "headquarters" so to speak of letter writing campaigns to our
legislatures in support of legislation for autism. Also, for staying on the
CDC and NIH in stepping up their efforts in Autism research.
This list is focused on the "Autism Awareness is the Key to Action" theme of
the Autism Resource Konnection - to keep us up to date on what we can do to
further the efforts started by the rally and the hearings.
It is my hopes that Shelley Reynolds of Unlocking Autism will use this list
to keep us up to date on how we can help in support of the Autism Awareness
Stamp legislation she did!!! Way to go Shelley!! She will need lots of
petitions signed, and hopefully she will post to
autism-awareness-action@egroups.com to tell us what to do!
It is my hopes that The Autism Resource Konnection will post information on
future rallies on this list! Way to go with the rally Joanne, Kim, Jeff,
Jacques and gang!!!
So, it is my dream that this new list will be THE AUTISM AWARENESS ACTION
LIST of all lists!!! Where we all post who to write to support the bills
we need, and so forth!! .... as well as other Autism stuff!!!
Thank you!
Michelle Guppy
Here are the links to subscribe to the new list.
If you would like to subscribe to this group:
1. visit
http://www.egroups.com/subscribe/autism-awareness-action
-OR-
2. send email to autism-awareness-action-subscribe@egroups.com

This seems so reminiscent of the tobacco companies testifying that their
products are "not addicting" bla bla bla. And that it could not be
"proved" that smoking cigarettes cause cancer. Well, the tide eventually
did turn on that one, and they are FINALLY in big trouble. How many years
did it take though?
I personally think the vacinne Hep B started it, being the first jab babies
get, assaulting the immune system, thus setting up the following vaccines to
do the real damage, and utimately getting the blame. My older children are
normal and 2 are gifted. They never had a Hep B shot but did have all other
shots. My third son is a pilot and in the Air Force, and has had 2 Anthrax
shots, which worries me. It is my youngest, who had Hep B, and at 18 months
had 9 vaccines introduced in one day, that is autistic. ~Marlene

I was amazed at the testimony and am thrilled with Rep. Dan Burton and his
responses. My son was not effected initially by the MMR simply due to
timing but the DPT could have been the initial insult and he definitely has
the leaky gut and probably has the responses of the MMR reaction. I'm sure
he has the measles RNA in his digestive system and brain even tho the true
regression began a

Check out the CSPAN.org site they are on the first session. They also had a
supporting slide show.

I think his assosication with Merk Pharmicuticals clearly impacted his
testimony. I would have been embarrassed to admit they had paid my expenses
and then testify that the theories of MMR=autism were invalid. They also
fund his research....Mona

I can not down load real player
something to do with AOL. Please someone tell me is there some way I can see
ANY of the hearing or the rally. Can tapes of the hearing be bought? Is
anyone going to televise any of the rally?

I also would like a video tape. I checked the Cspan site under products
and they do sell video's , but the Autism hearings were not
listed...yet.
PAT FERO

Hi all,
Is there any way of getting a video tape from the c-Span Congressional
hearings on the autism-vaccines. I would like to send this to my Dr. If
there is could you let me know the price of it? Thank you, Lois

The high lactate and pyruvate levels should be pursued by a metabolic
specialist. Just my recommendation.
Ricci
Seattle, WA
<< Not sure if this the appropiate posting place for this
question but would appreciate any input.
We are living in Switzerland where unfortunately the
medical profession still looks at autism as a
psychotic condition and refuses to acknowledge any
links to immune disorders, vaccine, diets etc so for
our
27 month son we are working somewhat alone.
We have just had his blood analysed and the results
came back with high numbers for:
Lymphocytes 52pct (suggested range 33-50)
Sedimentation 13mm (range 1-10)
Lactate 4.69 mmol/l (range 0.5-2.2)
Pyruvate 272 umol/l (range 50-105)
T4 (EIA) 144 (range 58-155)
Enolase neurone 23.8 ug/l (expected less than 12.5)
amino acids - (umol/l)
alanine 476 (range 100-310)
arginine 86 (range 10-65)
lysine 144 (range 45-145)
glutamate 32 (range 25-250)
glutamine 493 (range 60-470)
Otherwise other results were mid-range. Doctor said
nothing meaningful in above data and our son probably
had a cold for the blood test, but from the little
I've read I see most of the above linked to body
immune issues.
Any comments gratefully accepted.
rgds
Paul

Not sure if this the appropiate posting place for this
question but would appreciate any input.
We are living in Switzerland where unfortunately the
medical profession still looks at autism as a
psychotic condition and refuses to acknowledge any
links to immune disorders, vaccine, diets etc so for
our
27 month son we are working somewhat alone.
We have just had his blood analysed and the results
came back with high numbers for:
Lymphocytes 52pct (suggested range 33-50)
Sedimentation 13mm (range 1-10)
Lactate 4.69 mmol/l (range 0.5-2.2)
Pyruvate 272 umol/l (range 50-105)
T4 (EIA) 144 (range 58-155)
Enolase neurone 23.8 ug/l (expected less than 12.5)
amino acids - (umol/l)
alanine 476 (range 100-310)
arginine 86 (range 10-65)
lysine 144 (range 45-145)
glutamate 32 (range 25-250)
glutamine 493 (range 60-470)
Otherwise other results were mid-range. Doctor said
nothing meaningful in above data and our son probably
had a cold for the blood test, but from the little
I've read I see most of the above linked to body
immune issues.
Any comments gratefully accepted.
rgds
Paul

All three sessions are still listed on the main page for viewing. Dr.
Goldberg was the second speaker in session two.
Cheryl
www.cspan.org

what did Wakefield say at congress and the scientist from Dublin?

I have not heard of this, but am very interested.
If you get any responses, please share it with the list.
Melissa

In case some of you dont know, Dr. Michael Goldberg was among the experts who
testified on Capitol Hill today at hearings about the autism epidemic in
Washington DC.
He did a fine job conveying our message that this new form of autism is an
illness that can be treated.
Jim Smyth, another great member of MAT, was there too and testified about his
experience as a parent. Our message was heard. Our efforts are paying off.
Congressman Burton, republican from Indiana, who chaired the hearings, has asked
the NIH and other governement agencies to review the studies included in the
record during the hearings. That includes the NIDS mission statement.

Someone please explain to me how this Dr. Offitt believes that the immune
load presented by a triple vaccine injected into a child's veins is
comparable to the "everyday foreign substances like milk and dust" that
babies encounter?

Dear Listmates
There is a German Pharm. company that puts out some kind of anedotes to
vaccinations and I am wondering if anyone has ever heard of this company.
A friend of mine from Capetown South Africa said that she got the medicine
and worked with a Dr. McKenna there to give her son the doses. It has done
a lot of good for the child who is almost recovered. I am curious if
anyone knows this Dr. McKenna and this company.
Thanks
--Rose Alford

Hi all,
I am trying to finish up name tags for people who registered. I got so many
registrations this last week and I cannot guarantee you will have one to pick
up. BUT, do not worry, we will have blank ones with pens for you to fill out.
If you are bringing children, put ARK id # on yours and theirs. The ark id #
is your area code and first 3 digits of your phone number. This way in the
worse case scenario, if a child gets lost we can match you up especially
important for non verbal kids. ALSO put an emergency contact number on the
back of the card, hotel number, cell phone number etc etc.
We have put them into envelopes BY STATES where you can search for your
name. If your name is on the envelope you have name tags, if not you can make
one up at the table.
THE NAME Tags will be at the OMNI HOTEL Friday night, see LISA and on
Saturday at the ARK/Unlocking autism table.
AND looks like our biggest state ( people who registered) will be NEW
Jersey!!! OF COURSE they are in driving distance, but YAY FOR NJ!!!
OK , i am off to do some more. Have a great weekend everyone, for the rally
goers cya soon and for the people who can't come say your prayers that we
gets lots of media attention. This could be huge!!!! WOOOOO HOOOOOO!!
steph

Hello Everyone
Hope you don't mind me joining this list just to advertise my list. My
list is for aspergers children/teenagers and there sisters and
brothers to talk about problems and just to act as a support group. As
there is not much for children/teenagers and there sisters and
brothers in form of support groups.
Please pass this information on to people who may be interested.
Thanks
You can subscribe to this mailing list at this web address.
http://www.onelist.com/group/aspergers-teens
Thanks for listening
Christine

del * nnc@...

Major Players to Testify
A presentation panel entitled Autism - The Vaccine Connection is made
up of some well-known names: Dr. Andrew Wakefield of Royal Free and
University College Medical School, London, England;
Professor John O'Leary of Coombe Women's Hospital, Dublin,
Ireland.
Dr. Vijendra K. Singh of the Utah State University, Centers for Disease
Control and Prevention.
Dr. Paul A. Offit of the University of Pennsylvania.
Dr. Brent Taylor of the Royal Free and University College Medical
School London, England.
Another panel of six will feature a Parent's Perspective
1. Mr. Kenny Curtis, Catonsville, Maryland
2. Mr. James Smythe, Carmel, Indiana
3. Mrs. Shelly Reynolds, Baton Rouge, Louisiana
4. Mrs. Jeana Smith - Denham Springs, Louisiana
5. Mr. Scott Bono, Durham, North Carolina
6. Dr. Wayne M. Dankner, San Diego, California
Does anyone know who the witnesses will be?
Jan

I'M NOT YELLING IN CAPS - I'M BEGGING - PLEASE CONTACT ME IF YOU CAN ASSIST
IN CALLING WRITING AND FAXING THE NATIONAL MEDIA CONTACTS I HAVE FOR
COVERAGE OF THE HEARINGS AND RALLY THIS WEEK.
I HESITATE TO POST TO THE LISTS THE CONTACTS - SO E-MAIL ME PRIVATELY AT
TGUPPY@... IF YOU CAN ASSIST. I WILL BEAM YOU THE FAX NUMBERS AND
TELEPHONE NUMBERS OF WHO TO WRITE.
THANK YOU!!!
C-SPAN BEING THE TOP ONE!!
Michelle Guppy
tguppy@...

Does anyone know who the witnesses will be?
Jan

I wonder if it's too late to get this in the Congressional hearings??
Michelle Guppy
Subject: Hepatitis B Vaccine: School Nurse Perspective
This is a school nursing perspective for the congressional hearings
regarding the safety of the hepatitis B vaccine that is being mandated for
newborns and now older children in America. Our Central District School
Nurse Association asks you to please consider the following information and
submit it into the congressional testimony. We continually see more and
More
damaged children entering our schools, and are very concerned that a major
portion of that damage is due to the hepatitis B vaccine's assault on the
newborn neurological and immune system.
I am a registered professional nurse and the district health services
coordinator for a large school district. I am writing on behalf of all the
school nurses in our district. We have very grave concerns about the
hepatitis B vaccine. For the past three or four years our school districts
have noted a significant increase in the number of children entering school
with developmental disorders, learning disabilities, attention deficit
disorders and/or serious chronic illness such as diabetes, asthma and
seizure
disorders. Each of the past four years has been worse than the year before.
There is only one common thread we can identify in all these children: they
are the children who received the first trial hepatitis B injections as
newborns in the early 1990s. As the hepatitis B compliance rate in newborns
has gone up in our community, so has the percentage of damaged children.
This
is very alarming.
Because of having so many damaged children we have tried to find the long
term clinical trials that ruled this vaccine "safe and effective". We
discovered through an exhaustive Medline search that the FDA based its
decision to approve hepatitis B vaccine for administration in the first
hours
of a newborn baby's life upon clinical trials and upon post-marketing
surveillance studies in which patients and their doctors were asked to
report
any adverse effects they noticed within 4-5 days after each injection [4
days
for SmithKline and 5 days for Merck]. The problems being reported in
increasing numbers as occurring after hepatitis B vaccination appear to be
autoimmune and neurological in origin. Such problems take weeks to months
to
produce noticeable symptoms, and cannot be spotted in a 4-5 day observation
period. These are the only clinical studies that have been done by Merck or
SmithKline. There is not one long-term study that we could find. The CDC
and
FDA have no idea what the long term effects will be on the newly developing
neurological and immune systems of the infants who are injected with this
vaccine. They seem to only be concerned with denying the connection between
these damaged children and the hepatitis B shot they received within a few
hours of birth. The CDC even admits the lack of study and states they do
not
even know how long the vaccine will be effective. We found this amazing
since
the vaccine was developed for a population at risk for hepatitis B: IV drug
users, high risk medical professionals and those who are involved in high
risk sexual practices.
In 1950 (before mass immunizations began), the USA had the third lowest
infant mortality rate in the world. By 1986, the USA dropped to 17th place.
In 1995 the USA dropped to 23rd and now the USA has dropped to the
appalling
position of 24th in the health of its children (but the USA is now first in
vaccine compliance through government mandates). Does this make you nervous
too?
The elementary grades are overwhelmed with children who have symptoms of
neurological and/or immune system damage: epilepsy, seizure disorders,
various kinds of palsies, autism, mental retardation, learning
disabilities,
juvenile-onset diabetes, asthma, vision / hearing loss, and a multitude of
new conduct/behavior disorders. We have come to believe the hepatitis B
vaccine is an assault on a newborns developing neurological and immune
system. Vaccines are supposed to be making us healthier, however, in twenty
five years of nursing I have never seen so many damaged, sick kids.
Something
very, very wrong is happening to our children. The census of ill children
seen in our health rooms each day has increased by 300% in only four years.
It had remained relatively constant in all the years before.
In our last regional school nurse meeting we discussed whether the
combination of so many viruses at one time (hepatitis B vaccine at the same
time of the DPT, OPV and MMR) is causing the infants immune system to be
overwhelmed and unable to mount a sufficient defense response. We are
advocating clinical studies to determine: Is the combination of all these
viruses at one time an assault on an infant's immune and neurological
System
that increases the chances for adverse reaction AND what are the long-term
neurological and immune system responses to these vaccines. We are all
continuing to research this issue and will be happy to share the many
resources we have found with you. I hope you will do the same as you open
Up
this issue.
We (nurses, principals and teachers) have talked many times about the
possible cause(s) of the continuing increase in pervasive developmental
disorders (PDD), such as autism. From the literature we have found, we
should
expect a rate for PDD of about 1 in 10,000. In our community the rate in
Kindergarten, 1st and 2nd grade is more like 1 in 150. The teaching staff
is
overwhelmed.
As school nurses, we have had many parents calling and asking how they can
exempt their children from the hepatitis B vaccination (HPB). Many of them
have spent long hours in study and research perplexed over this issue. For
the past six months we have been studying documents, books and research
articles published by internationally respected doctors and scientists that
cause us grave concern. You must understand that we began this study to
reassure our parents and show them the truth about how safe vaccines are.
Unfortunately, our sincere, honest, dedicated study has caused a complete
reversal of our once strongly held beliefs. Instead of being able to
reassure
the parents, we have found ourselves being drawn deeper and deeper into
this
unbelievable controversy over vaccines that is raging among physicians,
scientists, researchers, parents, and the government. We pray you will have
the courage to shine the light on this controversy through these hepatitis
B
hearings.
My daughter's own experience with the hepatitis B vaccine made me much more
open-minded to the information we have been receiving from parents,
teachers
and other nurses in our community. I personally have had to research this
on
my own to determine if I have been enforcing a policy that is actually
harming more children than it will ever help. I have spent countless hours
reading books, vaccine-hearing testimony, research papers, medical journal
articles and Internet web-sites from around the world. I did not come to my
decision easily or lightly, I assure you. Twenty-five years of total belief
in something does not shake that easily. I have repeated the well-rehearsed
refrain "Be Wise & Immunize" thousands of times during those years and
reassured countless parents that they were doing the right thing by
vaccinating their precious children . . . even the ones who came to me with
serious doubts and reservations. I will now have to live with that.
We are all now faced with a moral dilemma: will we protect the "sacred cow
of
conventional vaccine philosophy" or will we stand up and speak out for the
"health and well being of innocent children"? We choose children. We
wonder, which will our government choose?
Because the hepatitis B vaccine was developed for those at risk of disease,
including IV drug users and sexually promiscuous individuals, efforts to
require administration of the vaccine to most, if not all of the U.S.
population is very controversial. The increasing number of adverse reaction
reports connected with this vaccine exacerbates the controversy. The
controversy stems to a great extent from our lack of understanding of the
mechanisms of the immune response to the hepatitis B surface antigen and
lack
of long term follow-up of individuals who have received the vaccine. In a
January 27, 1999 press release, the National Vaccine Information Center
(NVIC) released figures which show that the number of hepatitis B
vaccine-associated serious adverse event and death reports in American
children under the age of 14 outnumber the reported cases of hepatitis B
disease.
During our research we discovered a copy of the grant proposal submitted
recently to the National Institute of Health by Dr. B. S. Dunbar, who has
worked in autoimmunity and vaccine development for over twenty years and
was
honored two years ago by the National Institute of Health. Dr. Dunbar is
working with a team of veteran vaccine researchers from all over the world.
Their grant is requested for the purpose of studying the hypothesis that:
hepatitis B recombinant vaccine does cause adverse autoimmune reactions in
genetically susceptible individuals. This study will also provide new
insights into the predictability of determining adverse side effects of the
hepatitis B vaccine in individuals at risk as related to their
histocompatability subtypes. Their study of auto-immune diseases/symptoms
caused by the hepatitis B vaccine include: lupus erythematosus, rheumatoid
arthritis, vascular disorders, Guillain Barre syndrome, demyelinating
disorders such as optic neuritis (blindness), Bell's palsy, demyelinating
neuropathy (multiple developmental disorders), multiple sclerosis, diabetes
mellitus and chronic fatigue syndrome to mention the most common.
This group of internationally respected vaccine researchers headed up by
Dr.
Dunbar also point out that, "The studies (for the approval of HPB) were not
designed to assess serious, rare adverse events; the total number of
recipients were too small; and the follow-up was too short to detect rare
or
delayed, serious, adverse reactions." Finally they point out that "overall
the number of examples of adverse neurologic outcomes following receipt of
hepatitis B vaccine are of concern, particularly those resulting in
demyelinating neurologic disease."
They continue, "In view of these observations. . . it is medically crucial
to
evaluate the nature of the autoimmune reactions (i.e. risks) associated
with
the hepatitis B vaccine and to determine if individuals who will have these
adverse reactions can be identified in advance of receiving the vaccine".
There are critical questions that must be addressed to establish the
risk/benefit of the current hepatitis B vaccines in the United States.
These
questions are particularly important in view of recent mandates to
vaccinate
all children including newborn infants."
You may read this grant proposal at
http://webpages.netlink.co.nz/~ias/dunbar.htm
Many groups have called for a moratorium on hepatitis B vaccination until
some of these questions can be answered adequately. The NVIC reported
"Newborn babies are dying shortly after their shots and their deaths are
being written off as sudden infant death syndrome. Parents should have the
right to give their informed consent to vaccination and Congress should
give
emergency, priority funding to independent scientists, who can take an
unbiased look at this vaccine, instead of leaving the search for truth in
the
hands of government officials who have already decided to force every child
to get the vaccine". We agree completely. The NVIC can be contacted at
http://www.909shot.com for further information.
In Dr. Coulter's book, "Vaccination, Social Violence, and Criminality" the
thesis is developed that the "sociopathic personality" which has emerged on
a
mass scale in recent decades; and which is responsible for a
disproportionate
amount of crime and violence;is causally linked to the childhood
vaccination
program. Vaccination frequently causes encephalitis and neuropathy that in
turn leads to these post-encephalitic states and conditions. In his book,
Dr.
Coulter presents a time line of increase in developmental disability
related
to vaccine introduction that is indeed frightening. Dr. Coulter believes
about 20% of our children are suffering from this neurological vaccine
damage. We believe some of these vaccine experts should be on the
President's Youth Violence task force.
Our own school district's confidential health statistics show at least 20%
of
our children (K-3) have significant neurological damage and/or chronic
illness. The last three years have shown an acceleration in the numbers of
children who are entering our schools with these "developmental disorders".
(Could these be the same infants who received the first trial doses of
hepatitis B as only a few hour-old newborns?) As school nurses, working
with these damaged children on a daily basis, we pray this is not true. If
it is, the ramification to this generation of children is unthinkable!
Should we not pause, call for a moratorium on these poorly tested, rapidly
approved vaccines, and allow independent American physicians and
researchers
to study them before blindly injecting an experimental vaccine into an
entire
generation? (We have found the only ones declaring the vaccine's safety are
the ones who are making millions of dollars from its sales, whose
Employment
depends on it or the ones being funded by the drug companies vast number of
grants and fundings. The independent researchers seem to be coming up with
an entirely different report.) Vaccine producers have nothing to lose since
our U.S. Congress has made them immune from responsibility or liability for
injuries caused from their vaccines. The push is on for them to create more
and more vaccines. There are huge amounts of money being made by these
people
who no longer worry about the consequences of their inadequate clinical
trials. The United States government has had to pay out nearly a billion
dollars in damages to families who can prove their children have been
damaged
or killed by vaccines, and there are thousands more cases pending. I just
read that there are so many vaccine damage claims that Secretary Shalala
changed the rules to try to limit adverse reaction claims. Could this be
true? If so, shame on our government.
We believe, as medical professionals, that we are doing a great disservice
to
our country by forcing government mandated vaccines on all children. Please
research this and we pray you have the courage to speak out and tell the
nation what you find.
Sincerely,
Patti White, RN
School Health Services Coordinator
Warrensburg R-VI School District
Warrensburg Mo 64093 and
Missouri Central District School Nurse Association
rpwhitey@...

Actually, if you think about it has anyone ever heard of those who have
spinal cord injuries and cannot walk saying, "Leave us alone?" Please. Note
that Christopher Reeve is certainly not saying that. Thus, I say, "Ignore
the naysayers."
As we were . . .
Let's carry on.

I am a lurker from the WI CFS ASSOCIATION. I'm wondering what kind of
medical codes are used for DX along the autism spectum. I'm just
wondering if 323.5 "encephalitis following immunization procedures" has
ever been used. It minimizes, and the proof part is a problem, but the
code is there. Who gets this dx and what symptoms go with 323.5?
I apologize in advance for my ignorance on these issues...just trying to
figure out in how many ways the institutions see the spectrum.
PAT F

In a message dated 03/31/2000 9:17:36 AM Eastern Standard Time,
JOSKAT95@... writes:
<< I think it is a combination of
denial, guilt, fear of change, lots of primitive emotions. Kathy
I KNOW my son has autoimmune autism and I doubt he can be "cured" because the
damage has been done, not unlike the kids with PKU. There is no denial here
or fear of change, just that I know I am not going to believe that he will be
fine and set us both up for heartache. I do hope that we will find a
treatment that will help improve his autoimmune system and at the same time
help him improve even a little. I just want to be realistic.
Also it must be scarey to be a person with a disablilty and know that some
people think that you aren't a whole person because of it. I just try to put
myself in their shoes too. Maybe that is because I have met so many
wonderful, interesting and fun people with autism. And I am sure that many of
them are fine with people seeking medical treatment for their kids.

and some religions

This is the same attitude that surfaced when Nutrivene-D came out for
children with Down syndrome. Parents were livid that someone had come out
with a possible treatment. I actually saw an interview on television where a
mother said that it was wrong of parents to want to make their children
normal. "Ÿou should accept them as they are." I often wondered what her
daughter would say if given the option. I think it is a combination of
denial, guilt, fear of change, lots of primitive emotions. Kathy

Is MAT having a booth at the rally? Rosemarie

Everyone I talked to in the media said that for coverage of the rally on the
major networks, you have to fax or write in the request to the supervising
producer or the news desk. So, please, everyone make an effort to fax a one
page only sheet about the rally.
"Open Your Eyes to Autism"
and
Hear~Their~Silence
Rally for National Autism Awareness
April 8, 2000
9am until 6:30pm
On the mall between 3rd and 4th streets
Washington, D.C.
If you need the media contact sheet with fax numbers and addresses, please
E-mail me privately!!!
For the best chance, FAX TWO DAYS BEFORE THE EVENT! INCLUDE SOMETHING ABOUT
THE CONGRESSIONAL HEARINGS TAKING PLACE TO GO ALONG WITH THE RALLY - THAT
WILL INTEREST THEM!
Thank you for your help!
Michelle Guppy tguppy@...
On April 8, 2000 the Autism Resource Konnection will be hosting a rally in
Washington, D.C to promote National Autism Awareness.
The rally will be held on the Mall, between 3rd and 4th streets from
9:00 a.m. to 6:00 p.m.
Autism is a neurological disorder that affects more than 500,000 American
citizens and is now occuring in as many as 1 in 500 if not more. We
want to bring the Nation together to confront the issues surrounding the
epidemic numbers being reported in some states. We hope to raise the
Awareness to ensure increased government spending for research into the
causes and possible cures, obtain support for legislation to make that
possible, and to better the services provided to educate and serve this
ever-growing population.
As one of the focal points of the rally, Unlocking Autism will be
presenting their
"Open Your Eyes to Autism" project. They will be displaying thousands of
pictures
of individuals with Autism on 3' by 6' boards with the
first name of the person and their state.
For more information on the rally, please contact the Autism Resource
Konnection at
877 - ON-AUTISM or visit their web site at www.ark-inc.org.
For more information about the "Open Your Eyes to Autism" picture project
contact Unlocking Autism at 877-769-6736 or visit their website at
www.littleangels.org.
**************************************************************************

I received the following email re: coverage/broadcast of the April 6th autism
hearings from CSPAN today-
C-SPAN has not yet made the decision if the hearing will be covered. Once
that decision is made on the afternoon of April 5th the information will be
posted on our website www.c-span.org .
Thank you for your interest,
Viewer Information

It is very hard to make a diagnosis based upon behaviors. The NIDS diagnosis
is easier because you have laboratory test results as well as a fairly
typical developmental history and physical signs and symptoms to help you
differentiate between conditions. Kathy

My daughter wants so desperately to be like the other kids. She is tired of
being a unique being. She just wants to fit in with everyone else. She wants
to go to sleepovers and have a best friend. It is so easy to make grand
statements from the safety of adulthood. Not so easy when you are a kid. Kathy

It takes a few years to undue the damage caused by the malfunctioning immune
system. Neurospects show that eventually many of these children have actual
brain destruction. The body can repair itself but it does take time. If a
smoker stops smoking they will have normal lung tissue in 5 years. If a child
is less damaged he will not take as long to be repaired. the older the child
is the more damage has occurred and the less likely that complete healing can
take place. Having said that, one can never underestimate anything so I would
never not try the NIDS treatment just because my child was older. Kathy

Please post this to your on-line news letters and groups, and insert hard
copies in your organization news letters! Thanx, Tina Hendrix
Hi Listmates, Family and Friends,
As many of you know, my daughter Mary is diagnosed with Autism, Meghan with
ADHD, and me with Chronic Fatigue Syndrome! We all now have the opportunity
to gather funds that will directly effect our health and future. Together
let's reverse the devastation of these diseases!
Please support the "NIDS Research & Treatment Project". Investigation of
Immune-Modulating agents (to provide a cure for these related disorders) by
the Neuro Immune Dysfunction Syndrome (NIDS) Medical Advisory Board and
Research Institute, is already in its beginning stages. This board is
comprised of a world-renowned group of respected experts in the field,
including Dr. Michael Goldberg. Mary has been a patient of his for 3 years,
I have been for one year, and Meghan will be shortly. Dr. Goldberg has
provided us with excellent care in managing our symptoms.
All that is desperately needed to continue is funding. You can help by
donating through MAT (Medicine for Autism Today), a non profit organization
created by effected families to raise funds for NIDS. Meg, Mary and I are
walking in the Human Race to raise funds for this project. You can
participate by collecting pledges to sponsor our walk. These funds will go
to MAT for NIDS.
The Human Race is a joint effort by our local community for each person or
group to raise an unlimited amount of funds for their charity of choice. It
is hosted by the Volunteer Center of Santa Rosa, Calif. There are different
types of races, Running, bike riding, Wheel chair(rolling), and walking.
All participants are issued as many pledge forms as they want, to distribute
far and wide. So, in essence, our family could be the only ones walking for
MAT/NIDS, but could have a thousand people out there from all over,
collecting pledges for us. There is no minimum pledge, and no required number
of total pledges, and they are so easy to collect. I'll send pledge forms to
anyone wants one--just ask friends, neighbors, family, coworkers, etc. I set
them out at businesses, send them to school--there's a million ways to
generate pledges.
The Human Race is Sat. May 13, 2000. However, pledges can be solicited and
collected past that date as long as they reach the Volunteer Center by mail
by May 24, 2000. Its very low key. The Volunteer Center does take a small
cut for operational costs, but they also give prizes for groups that collect
a lot. We've won $$$ prizes two years. I am also giving this incentive:
*****A $100.00 GIFT CERTIFICATE (OF YOUR CHOICE) WILL BE AWARDED TO PERSON
(COLLECTING FOR MAT) WITH HIGHEST DOLLAR AMOUNT OF COLLECTED PLEDGES
SUBMITTED BY DEADLINE!
I attached a flyer about NIDS and MAT to the form, so it is self explanatory.
Please help us--more $$$$ for the NIDS project brings us closer to being
healthy again. Please e-mail or call me if you need more pledge collection
forms. My telephone number is (707)538-2193 if you need further info.
LET'S GO OUT AND GET THOSE $$$$$ TO HELP OUR KIDS!!!!!!!!!!!!!!!!!
Tina M. Hendrix
CureNIDS2000@...
MAT: http://www.MAT.org
NIDS: http://www.NeuroImmuneDr.com

Fiona,
See Dr. Goldberg as soon as you can. My son 4 1/2 has been seeing him for 76
months with much improvement ( increased language, eye contact, spontaneous
interaction, etc.). I live in the LA area so it is easier for me but rest
assured, it will be worth it to arrange to see him when he is on the east coast.
I know he is speaking to congress on April 6th and speaking at the
HEAR-THE-SILENCE rally April 8th on the Mall in Washington, DC. My guess is that
there won't be time to see any patients I urge you to call. Dr. Goldberg is on
the right track with the 'disease' and everything about the Neuro-immune
connection makes complete sense.
MARC SHARE

Hi- I am new to this list and hope that I'm at the right place. My son
Jackson is 3.5 years old and has dx of autism. We placed him on the
casein/gluten free diet when he was 2 years old for about 4 months- we had
wonderful results but unfortunately took him off the diet (long story) and
he regressed terribly last fall- lost language, stims came back, just not
the same. We went back on the GFCF diet 4 months ago and are seeing minimal
progress now (we had him tested this time- very allergic to milk/wheat). His
language is simply not coming back and it's almost like a "second onset" of
autism. I know that we are missing something and now I have come across the
work of Dr. Goldberg which I think (hope) is what this list is all about. I
live on the East coast but understand he visits here regularly to see
patients. I just wanted to introduce myself and make sure I'm at the right
place. As I stated previously, we are missing something big with my son and
I think the viral theory may be part of our answer. Thanks!
Fiona

I know of some children and young adults who have been denied an IEP,
special ed, services, and SSI benefits because their ''pseudo autism'' was
diagnosed as "ADD" or simply bad behavior. Sadly the ones misdiagnosed are
not only missing out on the proper education, they are being punished
through the juvenile court system, put in institutions where some had died
in restraints, and some are still in school forced into mainstream being
abused by their aide or teachers. I know of some in jail. The very
visibility of Temple Grandin, who's speeches are wonderful and inspiring,
may be somewhat counter productive I fear. Folks think if autistics are
that articulate and bright, what are they complaining about. They also
see the talented savants, and think "why mess around with the gifted" they
do not see the illness because the savants are not ill as our kids are.
This illness that drives us to doctors for treatments is the one that needs
a name that will draw respect. For now they are being diagnosed with PDD,
autism, ADD and sometimes no Dx at all because they don't fit all criteria
to meet 299.0 autism Dx. My son has two diagnosis, the autism Dx is for
services, but his primary doctor and the school prefer the more ambiguous
label of PDD diagnosis because "autism" seems so final and hopeless and
because of his social skills. He is not withdrawn, he leads his class in
song circle, he trained other kids to use the toilet, and even though he is
only in kindergarten, taught 3rd graders about trees even though his
language is still about 2 years delayed in speech. Autism diagnosis
specifies lack of eye contact and disassociation with others, which he has
overcome since simply removing milk from his diet. He is still intensely
preoccupied with trees, and has nearly all the other autistic symptoms.
I think that the Aspies and HFA and savants may have some fear that they
will be "controlled" with drugs and they do not want that.

Imagine how awful it was prior to 1943 that autistic persons were classed as
schizophrenic. Then in the 50' s the refrigerator mother was blamed as the
cause. Now this mimic of autism (ironic) has become an epidemic and again
forcing a segregation of diagnosis, which is pressing now.
I expect there may be a lot of misdiagnosing and confusion will follow when
the new name is announced, but I expect too that in the end the classic
autism numbers will be about the same as before. PDD has been the preferred
copout term used by a lot of doctors, but it is so ambiguous it defies
logic. My son has been diagnosed as both.

Hi everyone,
a while back I sent a post saying that one of our news stations did a
report on secretin.........
So I e-mailed them ( back then ) to tell them about the rally.
It sparked an interest, they e-mailed me for more info, and then said
they would get back to me.
I hadnt heard anything, so I e-mailed them again last week.
Today I got an e-mail from one of the reporters. He said he thinks
KARE-TV will hire a crew from their sister station in Washington DC
(WUSA-TV) TO DO SOME VIDEOTAPING ....IF ...I can help them with the
following..
Names and phone numbers of Minnesotans who will be going---he wants
the DC crew to be able to hook up with them.
Now...my friend Lynda and I will be going....but we dont want to be
the only ones on TV ( I'm camera shy, but will do it to raise
awareness)......ARE THERE ANY MORE MINNESOTANS OUT THERE GOING TO THE
RALLY???????????
He also needs a pricise timetable (where and when) events will be
taking place. ( I can handle that one )
He wants me to get back to him by the end of the day tomorrow if
possible....SO, ANY MINNESOTANS GOING TO THE RALLY...PLEASE CONTACT
ME ASAP!
Thankyou..........
Karen skhanson@...

Hi everyone!!
Tomorrow I get the draft copy of the article being written about me, my
boys. LD, and my web page!! I am going to scan a copy of it and send it to
the list tomorrow sometime. All I know so far about it is that my pic is
there, my web page address, and thats its about 350 words long! Not long,
but still its there!
I have everyones address and will be starting to mail photo copies of the
article on Friday!
If anyone wants a copy that has not sent me their address, please send me
your home mailing address.
Thanks!
Stacy

I take those statements to mean that we need to recognize that NIDS autism is
a disease process, and thus must be handled differently than infantile autism
which is not believed to be reversed by "cleaning up" the immune system. A
different approach is taken with the different types of autism, as the root
problem is different---just the symptoms are the same. I am saddened by the
reaction of these high functioning autistic people to our efforts; i don't
believe they understand that the medications we are using do not squelch our
children's individuality but enable them to open it up; my son would ASK for
his kutapressin injections because i believe he felt so much better and thus
happier when receiving this treatment.
Kate

In a message dated 03/28/2000 12:21:50 PM Eastern Standard Time,
xander95608@... writes:
I think that "these people" may be persons with autism who are afraid that
there will be sentiminent towards trying to eliminate them....as if they
weren't real people. As the parent to a son with autism I can understand
their fear although I do not believe that this is the goal. However I must
say that the following statement scared me alittle.<< It is past time the
"NIDS" autism and the classic autism have clearly distinctive diagnosis that
will be respected by schools, service providers, and the Social Security
administration.
Just what does this statement mean? Seems to be saying that children would
not be able to get proper treatment because someone decided that they didn't
fit a certain definition. YIKES that is scarier than the few people