™
FAMILY HEALTH
AND PARENTING BOOKS
"Providing BOOKS and RESOURCES
to Help Your FAMILY Thrive"
RESOURCES
FOR FAMILIES WITH VCFS
Additional information on many of these listings as well as other resources are
contained in the book: Missing Genetic Pieces
Strategies for Living with VCFS, The Chromosome 22q11 Deletion
CLICK ON BOOK COVER TO GO TO BOOK PAGE FOR ORDERING
This page is a work in progress and is updated on a regular basis.
VCFS Specific Support
| RESOURCES: |
| Educational Resources |
| Family Celebrations/Holidays |
M.I.N.D. Institute & NeuroTherapeutics Research Institute
Cognitive Analysis & Brain Imaging Laboratory
http://cabil.mindinstitute.org
Tony J. Simon, Ph.D., Associate Professor of Psychiatry &
Behavioral Sciences
University of California, Davis
Email:
tjsimon@ucdavis.edu
Tel.
916-703-0407, Fax.
916-703-0244
M.I.N.D. Institute
2825 50th Street, Rm. 2341
Sacramento, CA 95817
Velo-Cardio-Facial Syndrome Educational Foundation
Phone (732) 238-8803 Toll Free 1-866-VCFSEF5 (1-866-823-7335)
e-mail info@vcfsef.org; Director: Karen J. Golding-Kushner Ph.D.
VCFSEF, Inc., PO Box 874, Milltown, New Jersey 08850
22q11 Group in the UK
VCFS Foundation Qld - Australia
The Velo Cardio Facial Syndrome Foundation Queensland was established to help and support groups of VCFS sufferers and their families, with the view to social contact, sharing information and educating people about VCFS.
Center for the Diagnosis, Treatment and Study
of Velo-Cardio-Facial
Syndrome
Dr. Robert J. Shprintzen, Director
Jacobsen Hall, SUNY Upstate Medical University
175 Elizabeth Blackwell Street, Syracuse, NY 13210
Phone (315) 464-6590 Fax (315) 464-6593
FACE 22; Families Advocating for Chromosomal Education
Phone: (724)776-0970, Cell: (724)622-6096
megsmom008@aol.com
www.FACE22.org
Albert Einstein College of Medicine
Children's Memorial Hospital,
22q11 deletion syndrome program
2300 Children's Plaza, Box 59, Chicago, IL 60614 Phone 773-880-4454
Dania M. D'Achille, MS Program Coordinator
Gene Clinics
http://www.geneclinics.org/profiles/22q11deletion/
Medical Needs of Children with VCFS
The 22q and You Center - Clinical Genetics Center The Children's Hospital of Philadelphia
Search for "22q11" after clicking on this link and that will take you to The 22q and You Center.
Velo-Cardio-Facial Syndrome Institute (VCFS)
On-Line VCFS Support Groups
Parent Support & Resources
(Not VCFS Specific)
BOOKS AND RESOURCES FOR FAMILIES
FREE Family Ezine
Devoted to raising special kids with special needs
National Parent to Parent Support and Information System
http://www.nppsis.org/
The Waisman Center: University Center for Excellence in Developmental Disabilities
FACES: The National Cranialfacial Association
National Society of Genetic Counselors
National Father’s Network
http://www.fathersnetwork.org/
National Information Center for Children and Youth with
Disabilities
NICHCY
http://www.nichcy.org
Special Needs Advocate for Parents (S.N.A.P.)
Phone: 1-888-310-9889 e-mail: info@snapinfo.org
National Organization on Disability
www.nod.org
National Association for Child Development
Self Advocates Becoming Empowered
The Family Village
http://www.familyvillage.wisc.edu/
Help for siblings of children with disabilities
Children's Hospital and Regional Medical
Center/ Seattle, Washington
http://www.chmc.org
University of Kansas Schiefelbush Institute
for Life Span Studies
http://www.lsi.ukans.edu/lsi
Family Resource Guides
The ARC of the United States
http://www.TheArc.org
MUMS National Parent to Parent Network
http://www.netnet.net/mums/index.htm
Disability Resource Organization
http://www.disabilityresources.org/VELO.html
Focus Adolescent services
http://www.focusas.com/index.html
National Mental Health Information Center
http://www.mentalhealth.org/links/
Parents of Blind Children, Committee on the Blind,
Multiply-Handicapped Child
www.nfb.org/nopbc.htm
Family Support Products for Special Feeding
http://www.beyondconception.com
Genetic Information and Patient Services, Inc. (GAPS) http://www.aspin.asu.edu/geneinfo/index.html
Includes listings of government health sites and a health database
IRSC Internet Resources for Special Children
NIDCD
http://www.nidcd.nih.gov/health/voice/velocario.asp
DMOZ (Open Directory Project) http://www.dmoz.org/Health/Conditions_and_Diseases/Genetic_Disorders/
Meddie Health Search http://www.meddie.com/Conditions_and_Diseases/Genetic_Disorders/Velo-Cardio-Facial_Syndrome/index.html
Alliance coordinating offices:
PACER Center
(This is the Nationwide Center
which can direct you to local Alliance Offices.)
1-888-248-0822 toll free number nationwide
www.taalliance.org
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03/13/08
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