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B.R.A.S.S. Bend Redmond Asperger Syndrome Support. Home to the "new" planet syndrome. |
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Assistive Technology Act of 2004 (H.R. 4278) passes - The full U.S. House of Representatives passed the Assistive Technology Act of 2004 (H.R. 4278) on Friday night, sending it to President Bush for his signature. If you'll recall, the Senate passed this legislation on September 30th. ...Read more. A summary of the Assistive Technology Act of 2004
A Message from Doug Bartel from the Dan Marino Foundation - My name is Doug Bartel and I work for the Dan Marino Foundation, based in Florida. The Foundation was started by the NFL legend and his wife, around the time of their son's autism diagnosis. We support programs and services to help children with all kinds of developmental disabilities, and run a free-standing outpatient pediatric neurological hospital. And, a few months ago, we launched a brand new, first-of-its-kind internet TV channel, called www.Childnett.tv, which is getting an incredible response!! ...Read more.
FSU Center
for Autism and Related Disabilities starts hurricane assistance effort -
The
Florida State University Center for Autism and Related Disabilities (CARD)
serves children and adults with autism and related disabilities in 18
counties in the panhandle area of Florida. Autism is a lifelong
neurological disability that affects a person's ability to
PLEA TO PEOPLE MAGAZINE: Revisit Autism and Report the Whole Truth
Petition regarding their article in its September 27, 2004 issue
entitled "Desperate Measures".
The article contains inaccuracies and is misleading. This petition seeks
to educate the editors and reporters, asking them to revisit the issue
after learning the truth about vaccines and the cause of the autism
epidemic.
Unlocking
Autism is taking a poll:
Do you believe Thimerosol contributed to your child's autism?
Thank
you so much to everyone who participated in last week's poll.
Over 1,887 people participated and cast votes in the following
manner:
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Desperate Measures - Vaccine - Autism Link in People Magazine |
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Mothers' Anxiety Levels Linked To Autism And Dyslexia Babies At Risk From Stress In Pregnancy |
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SDSU National ASD Parents & Family Survey: How Effective?
- The following survey was designed to investigate treatment efficacy of various modalities used in the United States when working with children who have Autism.
Asperger's Confounds Colleges - A surge of students diagnosed with an autism-related disorder poses new challenges By Elizabeth F. Farrell
KUDOS: Thank you for the article on Moe Norman, the autistic savant golfer from Canada ("Golf's purest striker rarely missed a fairway," Sept. 29). It's rare to see autistics treated with respect, especially in the media, which is dominated by messages of how pathetic we are. I'm a woman with an autism spectrum diagnosis. I have an adult child also on the spectrum. We need more stories like this to bring balance. As my bumper sticker says, "Autism - It's not like you think."
Camille Clark
Davis, Calif. [USA] - Sports Section / USA Today - 10/05/2004
Parents, you did it! CSPAN will cover the flu vaccines and thimerosal hearing tomorrow. It will be taped and played Tuesday evening. CSPAN producers will call Dr. Weldon's office tomorrow to tell them what time the hearing will be played and which c-span station will broadcast it. When we find out, we will be sure to send you an e mail to let you know how to tune in. The NAA Team
PERKS publishes a monthly newsletter for families with children in Special Education in Central Oregon.
San Diego resident Chantal Sicile-Kira has written "Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger's Syndrome, Pervasive Developmental Disorder and other ASDs" (Perigee, $15.95), which won the 2003 San Diego Book Award for "Best in Health" for its British edition. The author attempts to demystify autism and provide an easy-to-read, comprehensive guide with practical tips and personal anecdotes, as well as experts' advice and a resource section.
Today is
October 1st and the Holiday Shopping Season is ON! With all the
teachers, therapists, home helpers, teacher's aides and more in you and your
child's life...gift giving at holiday time can be daunting.
WE HAVE THE ANSWER FOR YOU.
For a limited
time, Unlocking Autism Holiday Ornaments are available for only $7.00 each.
They are perfect for all the special people that work with kids with autism and
will remind
them of your child for year's to come.
Other Unlocking Autism gear items are on sale as well. Visit us at
www.unlockingautism.org.
ASA Launches One-Of-A-Kind, Online Directory of Autism Services - "AutismSource" Offers Users Free Access To Valuable Resources In Their Communities
Their Own Home / Brothers would benefit from shared home - Although they live in separate foster homes, it is hoped that these energetic and enthusiastic brothers can find a permanent home together. They need a family that provides individual attention, consistency and structure and keeps them focused on education. Cody is a rough-and-tumble 5-year-old who loves the outdoors and enjoys playing with trucks and magnets. He likes attention and hugs from adults, is on target academically and has done well in Head Start.
Tyler is sweet, charming and curious. He's fascinated by how things work, loves trains and likes to build things. He exhibits some characteristics of Asperger's syndrome (a form of autism) but attaches well with his foster parents and teachers and is up to grade level in his day-treatment program. Tyler is 6 1/2.
These boys will need some time to transition into their new home. If they are not the only children in the family, they should be the youngest. -- Ralph Wells
Cody and Tyler are among the approximately 300 Oregon children available for adoption through the state. Prospective parents should be aware that these children may have physical, emotional or intellectual challenges due to abuse and/or neglect. For more information on the availability of these children and how to obtain a home study, or to learn more about becoming an adoptive or foster parent, please contact the Special Needs Adoption Coalition at The Boys and Girls Aid Society, 503-542-2392; or the Department of Human Services, 800-331-0503.
HAS THE INTERNET CHANGED YOUR LIFE, OR ARE YOU JUST NOT
INTERESTED?
I am a PhD student at the University of Nottingham and am keen to hear
from adults (16 years old and over) with a diagnosis of Asperger syndrome or
high functioning autism, who would like to take part in a project
investigating how and why they are using the
Internet. I am particularly interested in how it is, or is not, being used
as a means of communication.
...Read more.
Exceptional Parent has exceptional news. There is the real possibility that physician volunteers for clinical research, or Doctornauts, can rapidly speed up the discovery of breakthrough medical discoveries to treat disabilities, chronic diseases and other illnesses both for adults and our children. ...Read more.
AB 2943 (mercury in vaccines) was signed
today by the Governor!!! [a press release will be available shortly] -
Statement by Rick Rollins of the M.I.N.D. Institute - On behalf of
California's children and the parents of those children who have suffered
the effects of vaccine induced autism, I congratulate and honor the
courageous and compassionate decision today by Governor Swartzenegger to
sign this landmark legislation. With his action today, the Governor has sent
a strong message that vaccines that contain mercury have no place in the
veins of California's pregnant women and young children.
Once again this Governor has demonstrated the uncompromising ability to
listen to common sense and logic while at the same time rejecting special
interest pressures when deciding the fate of an important public policy
issue. Young California children and pregnant women will now be spared the
unnecessary exposure to one of the many potent neurotoxins and poisons that
are found in our vaccines.
The entire California autism community is eternally grateful for the
Governor's historic and precedent setting action, and especially those of us
who live daily with children who
suffer from the effects of vaccine induced autism. We in California can only
hope that all other states as well as the federal government follows
California's lead on this important public health issue.
With your help, the Vaccine Data Petition can reach 10,000 signatures by this weekend! Please take a few moments to sign the online petition. Thanks everyone.
The NAA Team
http://www.thepetitionsite.com/takeaction/896046564
The national on-line “Show Us the Vaccine Data Petition” was announced by the National Vaccine Information Center (NVIC) at an August 23, 2004, meeting of the Institute of Medicine (IOM), National Academies of Sciences in Washington, D.C. At that meeting, parents of vaccine-injured autistic children protested that the Vaccine Safety Datalink (VSD) was being used by federal health officials to cover-up vaccine risks associated with mercury preservatives in vaccines. That day, the National Vaccine Information Center, as well as SAFEMINDS, National Autism Association, Moms Against Mercury, CoMed, NoMercury.org and Unlocking Autism, all called for full public disclosure of all government-held vaccine risk data in the VSD.
The federally operated VSD electronic database has collected information on vaccination and children’s health in cooperation with large Health Maintenance Organizations (HMO’s) for more than a decade. The CDC has conducted its own analysis of the data and published articles, most of which have denied a causal link between vaccines and chronic brain and immune system dysfunction. During the past two years, independent researchers were repeatedly denied access by CDC officials to the publicly funded VSD for the purpose of replicating and validating the CDC’s analysis of the data.
The hallmark of good science is replication and the hallmark of good government is transparency. Signing the “Show Us the Vaccine Data” petition will add your voice to the tens of thousands of other citizen voices who know how important it is for government-held vaccine risk information to be open to independent analysis.
For more information on the VSD and vaccine risks, click the link to read a presentation made by NVIC President, Barbara Loe Fisher, at the August 23 IOM Meeting. http://www.NVIC.org/Loe_Fisher/blf0804vsd.htm
To read and sign the petition click here: http://www.thepetitionsite.com/takeaction/896046564
Pass this on to all your lists. Our goal is 100,000 signatures!!
Kathi Williams
National Vaccine Information Center
421 Church St., Suite E
Vienna, Va 22180
703-938-DPT3
www.NVIC.org
New UO program trains autism specialists - The University of Oregon this week will launch the state's first teacher training program dedicated solely to preparing specialists in autism, a perplexing neurological disorder affecting an increasing number of children. Project PASS (Preparing Autism Specialists for Schools) aims to boost the ranks both locally and statewide of educators trained to identify and work effectively with children with autism, said Dr. Cindy Herr, assistant professor and research associate in the College of Education's secondary special education department by Anne Williams
60 MINUTES TO AIR PIECE ON JERRY NEWPORT AND MARY MEINEL ON SEPT. 29TH.
Eight years ago, "60 Minutes" introduced viewers to Jerry Newport and Mary Meinel, both of whom have a form of autism known as Asperger's Syndrome. Mary and Jerry had fallen in love and married after meeting at a support group. What's happened to the couple since then is the subject of "When Jerry Met Mary," reported by correspondent Lesley Stahl, which can be seen on 60 Minutes this coming Wednesday, September 29, 2004 at 8PM EST.
"ASPERGER SYNDROME: A WORLD APART" What is it like for parents who can't connect with their child? On Friday, October 1st, 2004. The Jane Pauley Show, we go inside the minds of children with Asperger Syndrome - a neurobiological disorder affecting as many as 1 in 300 children - in hopes of helping parents recognize the symptoms, and find solutions that can help their children lead full, productive lives."
Release of Educational Records for the Purpose of Medicaid Reimbursement - by the Oregon Department of Education - 9/24/2004
FBI joins probe into education district finances - The FBI has joined the investigation over alleged fraud at the Union-Baker Education Service District in Eastern Oregon. Department of Education officials will meet today in Salem with an FBI investigator, State Police detectives and the Department of Justice to evaluate the allegations and decide whether to pursue criminal charges, a state education official told legislators Wednesday. 9/2004
No Autsitics Allowed - One Year Later / Autism Society Canada Builds a Ghetto by Michelle Dawson 9/2004
Autism Society of Oregon has made some changes in their administration. Steve Edelson has stepped down as President of ASO and Genevieve Athens will be assuming this title. Steve will remain on the Board of ASO. Steve has been a tremendous asset in this capacity for ASO for many years and he will be featured in the next newsletter due out at the end of this month. If you get a chance, please thank Steve for his dedication to ASO.
Congratulations to Kathy Harris, former Oregon Parents United web master and past President of FEAT of Oregon for being named to the Board of Director's. The ASO has fulfilled all eight regions in Oregon with regional contact's and thanks all chapter members and parents for your support.
Announcing
a pre-publication sale of Eustacia Cutler's new book about raising her daughter,
Temple Grandin. Eustacia Cutler has written the story of raising the non-verbal,
often-violent child that Temple Grandin was 50 years ago. A Thorn in My
Pocket captures the years it took to nurture her through tantrums, to
protect her from the 50's label of "infant schizophrenia" brought on by what was
then-believed "frigid mothering," and to keep her from being warehoused in an
institution for the retarded.
Had Eustacia not won her visceral and intellectual battle with the social and
medical community as it was then, Temple Grandin would not be today a Ph.D., an
Associate Professor, and, inarguably, the most famous autistic person in the
world. The world would have been robbed of a beacon of hope to all afflicted
with the disorder.
A Thorn in My Pocket enthralls the reader with the author's death-lock
struggle with her own identity, with the protean mysteries of Temple's autism,
and with her husband's
belief that his daughter should be institutionalized.
A story of angst and guilt, myth and reality, family and society, Eustacia
weaves a
literary masterpiece as broad as all humanity.
Pre-publication
Special!!
Call
1-800-489-0727 -or- 1-817-277-0727
to receive this
new publication for only $19.95! (normally, $24.95) with free shipping anywhere
in the U.S.!
Software firm unveils game to help youngsters do math - "Commander Benchmark and the Super Learners" is the latest project of fast-growing Lunar Logic LLC, a Eugene-based software company owned by Arden and her husband, Mark Lipson. ...Read more.
Wyeth Comments on FDA Joint Advisory Committee Antidepressant Safety
Recommendation for Pediatric Population / Wyeth Commits to Work With FDA to Develop Appropriate Warnings for Pediatric Use - Press Release
THE ALLIANCE FOR TECHNOLOGY ACCESS AND FREEDOM MACHINES - The ATA is proud to co-present Freedom Machines, which was shot in nine locations around the US – including several ATA centers – with an award winning crew and Oscar nominated producer. Learn how you can become involved with ATA and Freedom Machines
National broadcast premiere on P.O.V., the acclaimed PBS documentary showcase, Tuesday, September 14 at 10 PM. (Check local listings.) Learn more at www.pbs.org/pov or www.freedommachines.com.
Clinical Trial Registration: A Statement from the
International Committee of
Medical Journal Editors - "Congratulations to the editors of the medical journals which
signed this statement calling on drug companies to release all research data on
clincial trials of new pharmaceuticals,
including negative as well as positive results."
...Read their
statement.
New Autism Website has its Own Autism Encyclopedia - The new website www.ChatAutism.com has an amazing resource for information. For those of you who don't know what a wiki is, its an online encyclopedia. The one on the new autism site called www.ChatAutism.com is a brand new initiative. It is all about autism and asperger's syndrome and is written by people who have autism themselves, it gives a real-life perspective to the facts of autistic spectrum disorders. The site itself will offer support to parents of children with autism and Asperger's, and also has a chatroom to discuss any issues that are related. There has been a large increase in the amount of diagnoses of autism within recent years, prompting concern by parents, and a real need for up-to-date information on
education, medication issues, and therapies. At www.ChatAutism.com parents can communicate and ask questions on the forum, or receive advice directly in the onsite chatroom. http://www.chatautism.com - Press Release (PRWEB)
Genetics key to Autism- (Ivanhoe Newswire) -- There has been a great deal of speculation about what causes autism in a child. Some reports suggest vaccines could play a role, but new research disputes this claim. Now a new report points to genetic factors as the main cause. One of the reasons investigators believe autism has a genetic basis is because twin studies have found that identical twins, who have the same DNA, are much more likely to share a diagnosis of autism than fraternal twins. However, the exact genes have not been identified, and many experts feel multiple genes may be involved. Research led by Baylor College of Medicine in Houston proposed that a complex model for genetic malfunction could explain autism. They feel some of these genetic factors are inherited and some happen in the genes of the autistic person. For their current study, researchers put together a five-part hypothesis of the cause of autism.
Study authors feel one genetic cause of autism has to do with gene expression.
They say two or more principal genes could play a role. In their own research,
they found
inheritance of extra material from chromosome 15 causes autism in a small number
of cases. They say this chromosome and the gene for Angelman syndrome, which is
found in this region, play greater roles than is currently appreciated. They
feel their study presents some fresh ideas about the cause of autism that can be
tested in a number of ways in future research studies.
This article was reported by Ivanhoe.com, who offers Medical Alerts by e-mail
every day of the week. To subscribe, go to:
http://www.ivanhoe.com/newsalert/.
SOURCE: American Journal of Medical Genetics, 20004;9999:1-10
9/14 NATIONAL CALL-IN DAY-FOR MONEY
FOLLOWS THE PERSON/ FAMILY
OPPORTUNITY ACT -
Council of Parent Advocates and Attorney's (COPAA) is soliciting proposals for presentations at its Seventh Conference to be held on March 10-13, 2005, in Atlanta, Georgia. Approximately 250-300 registrants are expected at the conference. Attendees will include parents, non-attorney advocates and attorneys. Registrants' level of knowledge of the law relating to the education of children with disabilities will vary widely, from novice through intermediate to advanced. Accordingly, proposals should bedeveloped, and will be clearly identified in the program, for one of those specific levels of knowledge. Proposals must be received on or before September 15, 2004, to be eligible for consideration. Click on the link below for proposal requirements.
http://www.copaa.net/Shared%20Documents/COPAACallforPapers2005Conf.pdf
PEOPLE Magazine is looking for a family who has a child affected by thimerosal in vaccines, that has a younger child who they then did not vaccinate. Call People Magazine's reporter, Diane Herbst, at 973-783-3466 or cell 973-698-7787. Herbst writes, "We are looking to do a story on autism and the link with vaccinations,
particularly in light of the recent Columbia University data." Joanne Fowler is the editor at People who is interested in this. Please forward this post to other families that might know a family that meets these requirements.
FEAT of Oregon presents a unique Halloween experience for the entire family! - It's an afternoon of pirate fun! Families can see the Pirates of the Caribbean, Curse of the Black Pearl Movie Interactive on Saturday, October 23,2004 at the Hollywood Theatre in Portland, Oregon followed by a swashbuckling good time and famous pirate food at Molly's Restaurant. Bring your children, have fun and help raise money for Autism. Proceeds to benefit FEAT of Oregon.
November 17,
2004 at 2:30 p.m. in Room 2175 of the Rayburn House Office Building in
Washington, D.C. For more detailed information,
In
February of 2003, William Jensen Cottrell, a young man diagnosed
with AS was indicted with 9 counts
"Superman" movies then became a famous advocate for the disabled after
being paralyzed from the neck down in a horseback riding accident, died
Sunday. He was 52.