AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER    
Tuesday, November 27, 2001 

INDEX:
*  Requesting Retraction: Regarding New Jersey Autism Council/ COSAC  "The First State Autism Registry" :
******************************
Dear Honorable Governor Donald T. DiFrancesco,

In regards to a story located on the COSAC website located at:
http://www.njautism.org/NID/newsindex
Regarding New Jersey: the First State Autism Registry:

This story is in grave error, Iowa was the First State with this type of Registry. Ours was formed in 2000, In 2000 we formed the Iowa Autism Registry and Worldwide Autism Registry. This was an Autism Awakening 2000 year initiated effort . Please take a look at the Web Site that Autism Awakening Sponsors for the Iowa and Worldwide autism Registry the website is located at:
http://autismawakeninginia.bizland.com/iowaautismregistery/

It is our hope that you will print a retraction or an update to include this corrected information! We do not mind that you are doing something simular, but to claim that you were the first one to do this is incorrect and false.
The information listed on the COSAC site is very close to what is written on the Iowa and Worldwide Autism Registry Site it appears that the only wording difference is that you change ASD for the actual wording for Autism Spectrum Disorder. as well as the opening paragraph and state names.

We will watch this site closly within the next 30 days for updates on this story.
We are also writing the  New Jersey Governor’, New Jersey Governor’s Council on Autism, Paul A. Potito  Or President of COSAC, and the Centers for Disease Control and Prevention requesting the same.

I hope you will make immediate changes.  It is my belief that this is an oversite and should be retracted. Please let me know your intent on this matter.

I also publish the Autism First Steps Online Daily Newsletter, and tomorrow's newsletter we will print a story requesting retraction
for this information with a copy of this letter attached . As well as any coraspondence on this matter. This will be an attempt to correct all errors of these statements with the General Public. It is also a sponsored program of Autism Awakening.

NOTE: Attached at the bottum is a copy of what is written in the COSAC Site regarding the Autism Registry.

Peacefully,
Lynn Wedewer
United States Autism Ambassador, and
Iowa Autism Ambassador
E-Mail: AutismAwakening@aol.com
1900 K Street SW
Cedar Rapids, Iowa  52404
319-364-2687

An Update on New Jersey’s Autism Registry
In 2000, The New Jersey Governor’s Council on Autism and the Centers for Disease Control and Prevention commissioned the establishment of a New Jersey autism registry to determine the number of residents who are affected by an Autism Spectrum Disorder (ASD). The resulting project, The NJ Epidemiologic Surveillance and Integration Center for Children with Autism (NJESICCA), aims to accomplish two tasks:
1) to collect a broad range of voluntary information from residents with an ASD and their families and
2) to carry out population-based surveillance of ASD in New Jersey. By carrying out these two related tasks, NJESICCA hopes to create a unique information resource that will accelerate efforts toward understanding, treating, and preventing ASD.

“Until recently, there has been little information on the number of children in the United States affected with an ASD, and many are concerned that the rates may be rising,” says Walter Zahorodny, Ph.D., NJESICCA Director.  “An ASD registry is necessary to understand the true prevalence of autism and to establish the core scientific information which will allow scientific studies to make headway against autism.”

According to NJESICCA, autism surveillance is necessary to:

° Establish the prevalence of ASD in New Jersey
° Monitor trends in autism incidence
° Reveal patterns in the expression of autism that would not otherwise be observed
° Guide autism treatment, planning, and evaluation
° Prioritize the future allocation of health resources

By establishing a collaborative bridge between families and scientists, the NJESICCA Project will:
° Develop accurate estimates of the incidence and prevalence of ASD in New Jersey
° Specify the biomedical and demographic characteristics of ASD
° Describe specific subtypes or variants of autism
° Conduct research and educational projects concerning the assessment and treatment of ASD
° Facilitate immunologic, genetic, neuroscience, and toxicologic research of autism
° Examine the course of autism over time and in response to various treatments and educational interventions
° Provide accurate ASD information to New Jersey’s families, professionals, and policymakers

New Jersey will be the first state to have such a comprehensive base of information about children with autism. The value of this registry will grow as a function of its size and completeness.  NJESICCA can therefore only be successful with the active support and participation of New Jersey’s individuals with ASD and their families.

To participate in the NJESICCA Project or to receive more information, please call 888-699-8038, fax 973-972-2095 or e-mail autism@umdnj.edu.

The NJESICCA Project involves the joint effort of clinicians and researchers from: The Department of Pediatrics, New Jersey Medical School; the Department of Preventive Medicine, New Jersey Medical School; Hackensack University Medical Center- Institute for Child Development; The Department of Pediatrics, Robert Wood Johnson Medical School; and the Developmental Disabilities Center, UMDNJ School of Osteopathic Medicine.  These efforts are in concert with The New Jersey Department of Education, the New Jersey Department of Health and Senior Services, and the Centers for Disease Control and Prevention, and are in participation with various New Jersey autism advocacy groups and families.

The information presented in this article can be found in the “An Autism Registry for New Jersey: NJESICCA” brochure from the New Jersey Medical School, University of Medicine & Dentistry of New Jersey (UMDNJ).

http://www.njautism.org/NID/newsindex



Thank you for contacting me.

As Acting Governor, I welcome input from those throughout the Garden State and beyond who are eager to share with me their thoughts, concerns, questions, and ideas. My staff and I will endeavor to be as responsive as possible to the many people using this electronic means of communication, as well as to those who, through letters and phone calls, contact my office.Again, I appreciate your taking the time to write to me.Sincerely yours,
Donald T. DiFrancesco
Acting Governor
http://www.state.nj.us/cgi-bin/governor/govmail/govmail.pl
NOTE: You can also contact Acting Governor DiFrancesco by writing to the Office of the Governor, P.O. Box 001, Trenton, New Jersey 08625-0001, or by calling (609) 777-2500.
******************************

Autism Awakening, Autism FIrst Steps Newsletter, or any staff do not endorse any individuals, groups or programs.  References regarding programs, meetings, resources, research, opinions, treatment, etc., should not be interpreted as an indication of endorsement.  They are provided for informational purposes only. This is an attempt to keep the nation advised to all diagnostic, treatment, therapy, educational,
options available as well as legislative autism updates and more.


To View Newsletter Policies they are located at the Newsletter Website:   
Direct Link::   Autism First Steps Newsletter   
http://autismawakeninginia.bizland.com/autismfirststepsnewsletter/

To have friends, Family, or professionals join:
1.  they can go to the above link
2. They can go to the Newsletter Group page located at:
Direct Link:: Yahoo! Groups : AutismFirstStepsAutismNewsletter   
http://groups.yahoo.com/group/AutismFirstStepsAutismNewsletter
3  Send a e-mail to AutismAwakening@aol.com and ask to be subscribed to the free online daily newsletter

Visit one of the largest websites Commited to bringing you the latest in news, options, and techniques, and more on Autism located at:
Direct Link:: Autism Awakening 4 Kids
www.AutismAwakening.com

To Submit a story, alert, readers post, or advertisement please e-mail AutismAwakening@aol.com

To be removed reply to this e-mail and requested to be removed from the list.

ALL INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR LEGAL ADVICE.  THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH YOUR HEALTH CARE PROVIDER.