Helpful Websites

International 22q11.2 Deletion Syndrome Foundation

For an extensive list of references/articles published about VCFS, DiGeorge and 22q11.2 deletion syndrome, click here.

Velocardiofacial Syndrome Educational Foundation, Inc.

22q11.2 deletion description

American Cleft Palate-Craniofacial Association
 
Cleft Palate Foundation

Victory Junction Gang Camp (Genetics Week)

University of Minnesota Cleft Palate-Craniofacial Program

Children's Hospital and Clinics-Minneapolis, Cleft Palate Craniofacial Clinics

22q and You Center, Children's Hospital of Philadelphia

Southeastern Center for Excellence for 22q

National Institutes for Deafness and Other Communication Disorders

American Speech-Language-Hearing Association

Chromosome 22 Central 
 
VCFS Foundation Queensland, Australia

Email Lists and Chat Groups

The VCFS & DiGeorge Email Listserve—send an email to to receive daily email correspondence from other families affected by VCFS and DiGeorge

Monday Night Yahoo VCFS Family Chat Group—(requires registration) 8:00 p.m. EST/EDT

Books

Practical Handbook for Educating Children with Velo-Cardio-Facial Syndrome and Other Developmental Disabilities by Donna Cutler-Landsman.  Available from Amazon.com for $55.00.

Velo-cardio-facial Syndrome: A Model for Understanding Microdeletion Disorders. Edited by Kieran Murphy and Peter Scambler. New York: Cambridge University Press, 2005. Pp. 243. $120.

Footprints of Hope: VCFS (Velo-Cardio-Facial Syndrome) by Raymond Tanner. This book 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 Raymond's life story (aged 54 - diagnosed at 43) and his two sons—James, deceased aged 9 days old, died 18 years ago; Andrew, aged 16. 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.

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.

Therapy Techniques for Cleft Palate Speech and Related Disorders, A book focusing on the treatment of speech disorders associated with VCFS is available from Amazon and other sources.  Authored by Karen J. Golding-Kushner, Ph.D.  There is one chapter devoted specifically to VCFS and similar genetic disorders. Available from www.amazon.com