About VCFS . .



Velo-Cardio-Facial
Syndrome
Educational Foundation,

Incorporated



2004 VCFSEF
Combined Conference

July 23-25, 2004
Atlanta, GA




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VCFS Articles & ReferencesNumerous articles in this section were published in previous VCFSEF newsletters.  Some require Adobe Acrobat Reader, which may be downloaded at no cost from Adobe by clicking the button to the right.

VCFS references include the VCFS Fact Sheet, periodic newsletters and past articles — many of which are available in the VCFS Information Packet, which can be mailed to you. However, this web site contains the most up-to-date information we have available.

Information presented on or through this site is intended for general information and education ONLY, and is not be used to “self-diagnose”.  Please contact competent medical authority regarding specific questions relevant to your own medical situation.  Contact us if you have problems accessing any item.


General Information:

Medical / Genetic Issues:

Psychiatric Issues:

Schools and Education Issues:

Speech-Language Development:

Swallowing / Feeding Issues:

    None presently Available

Other References

  • Newsletters, Periodic, produced by the Educational Foundation

  • Therapy Techniques for Cleft Palate Speech and Related Disorders, (posted 3/7/01)   A book focusing on the treatment of speech disorders associated with VCFS is now available from Singular Publishing Group/Thomson Learning. Authored by Karen J. Golding-Kushner, Ph.D., the volume book is the outcome of a meeting by a consensus panel of the leading experts in treating these disorders. That meeting was supported in part by a grant from the Educational Foundation in response to the recognized need for a book that detailed speech therapy approaches in children with VCFS. There is one entire chapter devoted specifically to VCFS and similar genetic disorders. Available from Thomson Learning for $44.96.

TWO NEW BOOKS ON VCFS !!! 

  • Footprints of Hope: VCFS (Velo-Cardio-Facial Syndrome)“, by Raymond Tanner
    From the author:
    “The book ‘VCFS Footprints’ of hope is a compilation of stories from families from Australia, Israel, France, New Zealand, South Africa, United Kingdom and the USA who tell about their trials and tribulations in bringing up a child with VCFS. It also describes my life story (aged 54 – diagnosed at 43) and my two sons – James – deceased – aged 9 days old, died 18 years ago; Andrew – aged 16. There are also additional information etc. The foreword is written by Dr Shprintzen Ph.D. Proceeds from the book will go to the VCFSEF Foundation and to the VCFS Foundation Queensland Inc new VCFS Clinic project. “  The book can be purchased from the Australian Online Bookshop web site. It is not currently published in the U.S.

  • MISSING GENETIC PIECES: Strategies for Living with VCFS, The Chromosome 22q11 Deletion”, written by Ms. Sherry Gomez of Arizona: A comprehensive HANDBOOK for Parents, Professionals and anyone wanting to know about Chromosome 22 Deletion (22q11) and its dynamics. Publication August 15th; advanced orders being taken on the web site.


     
         

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