December 30, 2002

Gloria Lenhoff's University Recital to be Covered by Japanese TV

During the week of January 18-25, the Fuji Television Network of Japan
will be producing a documentary on Gloria Lenhoff for the Network's
ongoing series on DNA and Genetics. The week of filming will end with a
previously scheduled recital by Gloria at Meek Hall of the University of
Mississippi where she will sing a wide range of soprano pieces from
Mozart, Handel and Puccini, to Samuel Barber and art songs in Arabic,
Indian and Japanese. This will be the first time that the University has
scheduled a recital by someone who is neither a faculty member or a
registered student there. Ms. Lenhoff's private voice coach is Professor
Gregory Rike of the University of Mississippi.

UPDATE: The Fuji Television Network of Japan has announced that the broadcast of the segment featuring Gloria and Williams Syndrome will air on March 15, 2003 at 9PM Tokyo Time.  Hosts for the program are George Tokoro and Ryoko Hirosue.

Gloria Lenhoff Recital of Classical Soprano Repertoire.
January 25, 2003 at 8:00 PM

October 26, 2002

NEW WILLIAMS SYNDROME SURVEY -- YOUR RESPONSES ARE REQUESTED

Drs. Howard Lenhoff, Colleen Morris and Paul Wang need your help, and by
responding to their request you may be helping many individuals with
Williams Syndrome.

For their book being published by the Johns Hopkins University Press,
they are considering a section with the health concerns expressed by
parents.

They would like you to submit the following?

1. What you want health care professionals, i.e. physicians, nurses,
medical technicians, to know about specific characteristics of Williams
syndrome that will help them do a better job. You might want to list
some questions for: (A.) the doctor during regular office check ups.,
and  (B.) some for hospital personnel when they care for  patients with
Williams syndrome.

2. Health information for teachers. Please be specific for the age group
you to which you refer.

3. Health information for care givers who are responsible for the care
of adults living in group homes or "independently." These comments will
deal with older people with Williams syndrome.

Whether or not your comments are included in the book will depend on
number and kind of responses  Drs. Lenhoff, Morris and Wang receive. So
please give this project some serious thought and respond.

Please send your comments to Dr. Lenhoff at hlenhoff@uci.edu.

The sooner the better.

Many thanks,
Gary Rubin, Webmaster

August 17, 2002

When I took over as webmaster of The WS Comprehensive Web Site in March 1999, I knew I was taking on a challenge to provide all of you with a system of information, news and support.  My goal was to make this web site a valuable resource that would make you want to keep on using it. 

The WS Comprehensive Web Site is a source of great pride for me.  The feedback I receive from all of you makes the time and effort to put everything together all worthwhile. 

On August 17, 2002, the web site celebrated its 250,000th visitor! This tells me that I have accomplished what I started out to do.     Rest assured that I will not stop here.  I'm looking forward to reaching 500,000 and beyond.

Your children's pictures are adorable.  The photo album will continue to be an integral part of the web site. 

The WS Calendar is interactive so that you may add your own Williams events (picnics, meetings, parties, etc....).  If you prefer, send the information to me and I will make sure to post it to the calendar.

I have recently added a new section for your WS student/athlete's accomplishments.  Several of your children have won medals or awards at various events.  Send me a picture along with the information and   I will add it to the web site.

Finally, I will continue to provide you with all the latest news articles and medical/research information as it becomes available to me.

If you have any suggestions, thoughts or questions, my mailbox is always open.  I personally read every e-mail and answer anything I can.   If I do not have an answer, I forward the e-mail to someone who can answer your question(s) for you.

Again, for myself and the board members of the Williams Syndrome Foundation (WSF), thank you for your continued support of the WS Comprehensive Web Site.

 

Gary Rubin, Webmaster, WS Comprehensive Web Site
http://www.wsf.org

March 9, 2002

An apology to all people with Williams syndrome and their families

We received the following letter from a reader of our web page, and
sense that the author would like us to pass it on.  He wrote:

"I got interested in Williams syndrome recently. I went to school with
a boy who may have had this condition. This was in the first grade, and
I am 55 years old now. I, like so many kids that age was cruel in
kidding and making fun. I am still ashamed of this, but can't change the
past. However being a parent of very healthy children, and
grandchildren, I would like to say to all gifted and special people, and
their families, I am so sorry. "

February 13, 2002

Williams Syndrome
Ninth International Professional Conference
on Williams Syndrome

Long Beach Hyatt 
Long Beach, CA
July 21-22, 2002

CONFERENCE TOPICS

The meeting will feature keynote speakers and platform/poster presentations
on a variety of topics relating to Williams syndrome. The meeting will be 
held immediately following the WSA family meeting allowing for clinical 
research opportunities.

We are interested in receiving abstracts on the following topics:
· Molecular Genetics of WS
· Genotype-Phenotype Correlations
· Natural History & Medical Management
· Brain structure & Neuroimaging
· Behavioral & Psychiatric Problems
· Language & Cognition
· Developmental/Vocational Assessments & Interventions

2002 Abstract Deadline: Abstracts are to be submitted via e-mail or mail by 
Friday, March 29, 2002. 
Faxed abstracts will NOT be accepted.

Abstract submission: We prefer that abstracts be submitted in a Word 2002 file 
via email to mperez@med.unr.edu. Each abstract should include: introduction, 
methods, results and discussion. Please include the title of abstract, presenting 
author's address, phone number, fax, and email address. Please indicate whether 
you prefer platform or poster presentation. Abstracts will be reviewed by the 
program committee and acceptance notices will be mailed by 5/1/2002.
For abstracts submitted via regular mail, include one camera-ready abstract plus 
3 additional copies on one page, single-spaced, 12-point font with 1-inch margin.
    Submit abstracts:                     Request Registration materials:
    E-mail: mperez@med.unr.edu            Email: TMonkaba@williams-syndrome.org 
    Colleen A. Morris, M.D.               Williams Syndrome Association
    C/O Michelle Perez                    PO Box 297
    2040 W. Charleston Blvd., #401        Clawson, Michigan, 48017-0297 USA
    Las Vegas, NV 89102                   Phone: (800) 806-1871
    Phone: (702) 671-2224
Sponsored by the Williams Syndrome Association